When the emergency room doctor said there was nothing else they could do for her husband, Deborah McDonald recalled a rush of emotions. She couldn’t explain how she was feeling other than to say “it’s a crazy time” when someone else has to tell you what’s best for your loved one.
McDonald, 65, said she and her husband of 27 years, Earnest, didn’t talk much about what they wanted for end-of-life care.
Even after working as a clinical partner at Mercy Hospital for nearly a decade, McDonald said there’s a difference between seeing your clients near their life’s end versus watching your loved one on the same journey.
Earnest McDonald pastored at New Hope Missionary Baptist Church for over 20 years. He’s spent his life serving his South Side community as a spiritual leader.
Now, as McDonald nears his final days, his wife is using the hospice services offered by JourneyCare to help care for him. JourneyCare is the largest nonprofit offering palliative, supportive and hospice care in both Chicago and Illinois.
Deborah McDonald said she was hesitant to use the service at first because it felt like she was giving up control – and giving up in general.
“The word hospice represents fear and death because all patients eventually make that transition. For me personally, there’s nothing to fear,” she said.
Getting a clear understanding of what it means and what it entails was important in the decision-making process for the McDonalds.
JourneyCare offers end-of-life education services to both groups and individuals.
“Talking about death is difficult,” Deborah McDonald said. “Nobody wants to think about that impending moment. Being well-informed is what it’s all about.”
Social worker Jennifer Green emphasized that hospice does not mean you are dying right away. Some patients have been in hospice care for a couple of years, though that’s not the norm.
Citing Medicare rules, Green said at least two physicians need to believe an individual has a life expectancy of six months or less in order to be considered for hospice care.
Green said ensuring everyone has access to hospice services is JourneyCare’s commitment regardless of a person’s socioeconomic or insurance status.
Following CDC guidelines on COVID-10, Green’s team, which focuses on Chicago’s West and South sides, continues to make visits to patients during the pandemic.
Dr. Veronica M. Bate-Ambrus, founding director of workforce development for JourneyCare, said it’s crucial to normalize conversations about end-of- life care.
“We need to start acknowledging death is a natural part of the life cycle. It’s going to occur for everyone. We ought not wait for these decisions,” she said.
Upon learning of a shorter life expectancy, Bate-Ambrus said the hospice team helps to actualize new hopes, wishes and goals for patients. It’s not a service where you give up all hope. The scope of that focus, however, changes to being comfortable and ensuring whatever life goals you have can still happen.
Bate-Ambrus suggests prioritizing these important decisions as early as possible, stating there needs to be a paradigm shift to applying end-of-life decision making to ourselves, not just for loved ones.
Anyone 18 and older can sign their own advanced directive. An advanced directive, such as five wishes, is a document used to communicate healthcare and comfort wishes to your healthcare provider and those close to you.
JourneyCare provides education on the five wishes document and how to initiate those difficult conversations with family and friends.
Hospice is underused in Black and brown communities. Bate-Ambrus stressed the need to have more community education informed by cultural histories and stigmas associated with discussing end-of-life care and planning.
“There are some cultures in which talking about anything related to death or dying is a taboo … The focus may change from curative methods to palliative methods. How can I make the rest of the time I have left as comfortable and productive as possible?”
Black and brown communities’ mistrust of the medical and healthcare community is not unfounded, Bate-Ambrus said. “There’s intergenerational mistrust as a result of institutionalized racism that’s taken place in certain healthcare settings.”
She urged the importance of diversifying the healthcare workforce and to have widespread cultural humility training so it’s easier to understand where that mistrust comes from.
In order to increase awareness about hospice in minority communities, Bate-Ambrus said JourneyCare is being proactive rather than reactive.
While hospice is primarily an in-home resource for patients, JourneyCare has in-patient hospice care centers at Rush University Medical Center and Northwest Community Healthcare in Arlington Heights, as well as two free- standing facilities in Glenview and Barrington.
The centers are for patients who need around-the-clock pain and symptom management. However, the goal is to always allow the patients to feel comfortable enough to return home.
Patients receiving in-home care are assisted by caregivers; CNAs, social workers and chaplains, who visit intermittently.
JourneyCare’s communications specialist Elisabeth Misretta said pain and symptom management are among the major focuses in hospice care.
“Curative treatments are no longer the focus, so how do you make the loved one comfortable?” Mistretta said. “Maybe you need a hospital bed or a lift, or personal care like help with bathing.”
Last year, Bate-Ambrus was hired to lead the Hunter Family Foundation Workforce Development Initiative.
This mostly donor-funded program includes three pillars: apprenticeship, community education and clinical education. It’s objective is to bridge gaps between hospice and palliative care, and provide access and education about these services.
The first facet, apprenticeship, gives current CNAs the opportunity to be part of a bridge program to become RNs. In partnership with community colleges in the Chicago area, six CNAs are to be part of the first cohort.
Recent JourneyCare hires can also be apprentices to become community health workers. They function as a connection between the agency and other community healthcare providers where there’s a need.
The second facet, community education, seeks to offer information about a neighborhood’s cultural history, end-of-life planning stigmas, and hospice and palliative care services.
Lastly, there’s clinical education. JourneyCare hosts local university students who are completing clinical rotations from a variety of disciplines including physicians, nurses and social workers.