Black History Month provides us all the opportunity to reflect on the contributions and impact of black Americans on us and our country. This year we want to look at the impact of Black healthcare workers and creators of hospice and palliative care. From visionaries like Dr. Robert Lee Brown and Dr. Bernice Catherine Harper to the nurses and professionals who give their all every day, Black healthcare workers are a core part of medical, hospice, and palliative care in America.
A brief history of hospice care
The founding ideas and practices of hospice care are credited to a British nurse named Dame Cecily Saunders. Saunders established the first modern hospice, St. Christopher’s, in a suburb of London in 1967. Saunders’ belief was that every human should live with “a sense of fulfillment and a readiness to let go.” She understood that patients with a terminal diagnosis required a specified plan of care unlike anything seen in modern hospitals at the time. This plan included creating a patient-centered atmosphere with focused mental, physical, and emotional care outside of traditional, sterile hospital environments. She felt patients should be moved to their homes or a home-like environment instead.
Saunders’ work at St. Christopher’s showed the medical world that the consideration of psychological and emotional needs as part of the “continuum of care” was as important as medical treatments and interventions. This focus inspired other medical professionals around the world including Dr. Elisabeth Kubler-Ross who wrote On Death and Dying in 1969. In this best-selling book, Dr. Kubler-Ross pushed for patient choice and advocated home care outside of institutions for patients with terminal diagnoses.
As the hospice movement spread across the US–starting with the first US hospice established in 1974 in Connecticut–more and more professionals saw its potential. One of those professionals was Dr. Robert Lee Brown. Dr. Brown noticed how African American patients faced immense struggles acquiring not only standard medical care but also necessary end-of-life care. Black patients faced discrimination and financial insecurities, and also, most importantly, conflicting cultural attitudes towards death and dying.
To help these patients get the care he knew they needed, Dr. Brown established the first hospice program centered on African American patients. The program opened in Harlem in 1977, and it was devoted to providing compassionate, culturally appropriate aid for African American patients and their families. He was one of the first people to ensure a focus on “compassionate home-based or facility-based [care] in accordance with [a patient’s] wants and backgrounds.”
As popularity grew, even politicians began to realize the benefits of hospice care for terminally ill patients. By 1983, the Reagan administration signed the Medicare Hospice Benefit into law, covering care for 80%-85% of hospice beneficiaries. One of the main advocates for this benefit was Dr. Bernice Catherine Harper, the first black woman to earn a Masters in Science in Public Health from Harvard. Dr. Harper’s advocacy helped convince the government to include the hospice benefit into Medicare and to make it a nationally guaranteed benefit under the Clinton administration in 1993. Because of this work, Dr. Harper was honored as the National Person of the Year in 1993 from the National Hospice and Palliative Care Organization (NHPCO).
Black patients in hospice
The work of Dr. Brown and Dr. Harper is still important to the ethos of hospice care today. The focus on crafting a care plan unique to the individual that considers not only their medical records but also their cultural background is key to the work done in hospice programs. It is also key in some communities overcoming their hesitation to hospice care.
According to recent statistics, usage rates of end-of-life care for African Americans falls behind that of Caucasian counterparts. The NHPCO reports that 50.7 percent of Medicare recipients utilize hospice care. Of those 50.7%, 82% are Caucasian and only 8.2% are African American. This disparity can be attributed to many different reasons, not the least of which is a cultural apprehension to the medical system among Black Americans and other minorities. Major medical associations have worked to overcome this apprehension based on high profile practices of neglect and abuse for minority patients, but the cultural impact within these communities has been slow.
To read more about how hospice can better consider cultural and religious backgrounds, read our recent story on this topic on the Caregiver’s Corner Blog.
Learn about more Black medical pioneers
It’s not just the world of hospice care where Black pioneers have had an impact. Many Black medical professionals have completely changed the landscape of medical care in the US and beyond. There are people like Dr. Charles Drew who invented the precursor to blood banks which has saved countless lives here and abroad. Dr. Marilyn Hughes Gaston whose groundbreaking work led to a national sickle cell disease screening program for newborns and showed both the benefits of screening for sickle cell disease at birth and the effectiveness of penicillin to prevent infection from sepsis, which can be fatal in children with the disease. Also, Dr. Alexa Irene Canady who was the first Black neurosurgeon in the United States and became the chief neurosurgeon at Children’s Hospital of Michigan.
We encourage you to do your own research and read more about these remarkable and unsung Black heroes. The Duke University Medical Library & Archives has a wonderful website filled with information on important Black medical professionals. It’s a great place to start.
Below are some more great resources to start your learning journey of all the incredible Black professionals throughout history. It’s also important to remember the unnamed heroes, nurses, social workers, and specialists who help hospice patients every day. Their personal impact is immeasurable, and we’d be nowhere without them.
11 Black Innovators Who Shaped Healthcare
Black History Month and the Medical Advancements We Have Today Thanks to People of Color
Celebrating Black History Month: 12 Black American Medical Pioneers
