Shining a Light on Expanding Palliative Care

As my grandmother neared the end of her life, lacking the strength to recover from back-to-back hospitalizations of a broken hip and a subsequent stroke, her doctors began the discussions for what would come next. At that point, the focus was firmly on palliative care, improving her quality of life by managing her symptoms and pain. They recommended placing her in a long-term care facility and having her under medical supervision and pain regulation until she eventually passed. “Well, if she’s really on her way out, can’t she just come home?”, my father asked.

It was the obvious choice for us: my grandmother hated the restrictions and the discomfort of the medical centers and nursing homes she would be placed in as she recovered from hospitalizations. Her primary care physician briefed the team that, unlike many older Americans, my grandmother was accustomed to Indian traditions of living with and being cared for by family members. It was clear that living in a long-term care facility, under the care of strangers, would be mentally and emotionally difficult for her, and that she would feel better at home even if it meant less medical involvement. Her care team was almost taken aback by the request and reasoning, as if they weren’t used to patients and their families actively pushing for other options, but they gladly agreed to send her home.

But what if my father hadn’t asked? Would she have been sent to hospice care without any further questions? If the basis of palliative care is to inform patients of the options they have in regards to their end-of-life care, letting them set the terms and conditions and placing some control back in their hands, then healthcare providers should be better equipped to ensure that patients truly are aware of all available courses of action.

As modern medicine and public health have greatly increased human life expectancy, the following must also be considered:

•    The 65-and-over population in the United States is expected to reach 88 million people by 2050.
•    The US population continues to grow more racially and ethnically diverse, with an expected significant increase of racial and ethnic minority older adults
•    6 out of 10 American adults have a chronic disease, and 4 out of 10 have 2 or more chronic diseases

With this rapidly increasing, diverse demographic of people requiring pain and symptom management, it is critical to make sure that public health officials understand the importance of palliative care and that they are actively working towards making early palliative care to people of all backgrounds.

While palliative care access has grown in the 21st century, access to services still varies across states, and many palliative services are based in hospitals and cancer centers. Connecting people to primary care providers (PCPs) can expose patients to the idea of palliative planning and management much earlier. The benefit of such a relationship is that PCPs are positioned to perform symptom assessments, discuss relevant concerns, and can be involved in the process of advanced care planning. The patient-provider connection can make difficult conversations about treatment and care feel less abrupt and invasive, so a person can start considering care options sooner, avoiding the stress and conflict of making last-minute decisions. PCPs can also function as a patient’s strongest advocate in cases of advanced care, being able to communicate with specialists regarding the patient’s prior medical history, as well as expressing the patient’s wishes and requests regarding their care plan. The importance of helping people access and utilize primary care services has significant implications for short-term and long-term health and wellbeing.

Additionally, various cultures have their own unique preferences and attitudes about medical treatment and care, as well as differing viewpoints on death and suffering, making every patient vastly different. In some cases, disparities in communication and perspectives between the patient and physician can make it difficult to develop an effective advanced care plan. By partnering healthcare providers with community voices, such as local faith or cultural leaders, to recognize a patient’s cultural and religious beliefs and develop advanced care plans accordingly, public health officials and advocates can facilitate connections that create a better experience for the patient and their family.

As public health practitioners, we must continue to reevaluate our implicit biases and recognize that the most common options in healthcare are not the only options available. Palliative care is preventative care, and healthcare providers at every level should be comfortable with initiating conversations about their patients’ care plans and preferences, even when those conversations are difficult to address. With a population spanning many different ages, cultures, and health issues, healthcare should reflect that diversity. By approaching each patient with respect, being open and clear with the patient and their family about different avenues of care, and addressing questions and concerns with honesty, palliative care can be utilized more effectively for all.

Meghana Atre is a 2022 MPH candidate in the Department of Population and Family Health. She received her Bachelor of Science in Molecular and Cellular Biology from the University of Illinois at Urbana-Champaign.