Juneteenth – America’s Other Independence Day

Patient Experience Relies on Understanding Diverse Perspectives

Americans love their Fourth of July holiday. After all, it’s America’s birthday – the day we traditionally set aside to celebrate the signing of the Declaration of Independence and the establishment of a free nation where “all men are created equal.”

But for many, those hallowed words proved hollow. Hundreds of thousands of slaves throughout the young United States – especially in the South – would need to wait almost another century before their rights to equality were officially recognized.

Another View of History

On July 5, 1852, famed African American abolitionist Frederick Douglass, himself a former slave, delivered an impassioned speech spelling out the irony inherent in the July 4th celebration:

“This Fourth of July is yours, not mine. You may rejoice, I must mourn,” Douglass said. “What, to the American slave, is your Fourth of July? I answer: a day that reveals to him, more than all other days in the year, the gross injustice and cruelty to which he is the constant victim…”

It would take another 13 years, hundreds of thousands of lives, and a Civil War that tore apart the fabric of the American nation before four million African-American slaves would get their own taste of freedom.

Juneteenth – Freedom Reborn

On June 19, 1865, Union General Gordon Granger, military commander of the defeated Confederate state of Texas, read aloud General Order No. 3, telling the populace of Galveston that: “The people of Texas are informed that, in accordance with a proclamation of the United States, all slaves are free.”

Spontaneous celebrations among the newly freed African American population quickly erupted across the South as Juneteenth was born. African-American communities across the U.S. soon adopted Juneteenth as their own holiday, using it as an occasion for celebrating freedom with public events, picnics and church gatherings.

Understanding Leads to Compassion

Once we understand the history of Juneteenth and how it came into being, it’s easier to appreciate why many African Americans consider Juneteenth to be a day to celebrate not only the vision of freedom President Lincoln described in his 1863 Emancipation Proclamation but also the original promise of the Declaration of Independence.

Since our childhood, we’ve been told that America is a melting pot, comprised of people from all over the world, representing a multitude of religious backgrounds, races, cultures, customs, languages and lifestyles.

Healthcare providers face the everyday challenge of understanding how these differentiating factors may affect individuals’ or families’ attitudes toward illness, pain, coping and death. It is important to appreciate why these attitudes are held, because they can significantly influence their willingness to explore various treatment options. Hospice, in particular, can be an especially touchy discussion topic.

For example, according to statistics, African-Americans comprise approximately 12% of the U.S. population, but they make up only 7.6% of hospice patients. Ironically, African-Americans have a disproportionately higher rate of cancer and heart disease, which are among the top hospice diagnoses.

Researchers point out several reasons for this incongruity. As a rule, African-American families tend to be less trustful of the American healthcare system. In addition, because medical decisions tend to be made within the family, there may be a reluctance to consult with a new, unknown healthcare professional or someone outside the home. Finally, statistically speaking, African Americans tend to be especially reluctant to cease life-prolonging procedures such as tube feeding, organ donation, and palliative care in the hospice setting – because extending life is generally seen as something to be preferred.

Honoring Differences

Healthcare communicators need to recognize that their messages may be perceived very differently by diverse audiences and adjust accordingly to ensure positive patient experience.

As the U.S. healthcare system continues to evolve to one that is more population health-oriented and patient-centered, there is a growing need for healthcare providers to educate patients, families and the general public about what they can do to stay healthier, as well as the nature of specific healthcare challenges and treatment options.

Understanding their emotions, how they think, and the reasons behind these different perspectives is vital to helping patients and families make treatment decisions that are most appropriate for their individual situations.

It’s not unlike coming to appreciate the Juneteenth holiday. The better we understand the history and background of our patients, the better we can understand and honor the views and emotions that influence their decisions and actions.

Palliative Care Comes of Age

Once Seen as an End-of-Life Specialty, Palliative Care has Moved into the Mainstream

“It is not death that a man should fear, but he should fear never beginning to live.”

– Marcus Aurelius

For David R. Barile, MD, a geriatric medicine specialist based in Plainsboro, NJ, it was the steady calm of one of his patients – a grandmother and a woman diagnosed with a terminal illness that reinforced his vision of the promise of palliative care.

Faced with a life-threatening illness, she most likely was looking at weeks of chemo and radiation therapy that may or may not cure her. But either way, the treatments would sap her strength and make it extremely difficult to carry on with everyday activities she enjoyed.

But there was one more thing. No matter what, she did not want to do anything that would cause her to miss her grandson’s bar mitzvah. The best approach for helping her achieve her goal of living life the way she wanted? Palliatve care, which focuses on providing relief from the symptoms and stress of a serious illness.

A Question of Choice

For many doctors, the idea that a patient would choose to exert such a strong influence on her course of treatment might sound unusual. But to Dr. Barile, that kind of insight is something that has been lacking for too long.

Dr. Barile is also the founder and Chief Medical Officer for Goals of Care Coalition of New Jersey, an interdisciplinary partnership of leaders representing healthcare providers and systems, government agencies, and community organizations whose mission is to encourage patients, doctors and family members to talk about what type of care they want when facing a serious illness and to document their preferences in a care plan. Increasing awareness about benefits of palliative care is a key part of the effort. Recently, Dr. Barile discussed the topic of palliative care as a featured speaker at a Health Issues Committee Forum sponsored by the Chamber of Commerce Southern New Jersey. (Note: SPRYTE Communications’ CEO Lisa Simon is a member of the chamber’s board of directors.)

“The Coalition’s fundamental purpose is to organize medical care to help patients achieve their life goals,” explained Dr. Barile. The approach consists of four basic steps:

  • Diagnosis
  • Prognosis
  • Identifying patient goals
  • Aligning treatment to achieve those goals

Setting Goals

It sounds simple. But as Dr. Barile notes, it’s also somewhat uncommon. More common is the  approach of “diagnose then treat.” That works well in most health situations, but falls short in end-of-life care, Dr. Barile says. And for many patients it creates a very stressful and unwanted burden.

What is often lacking is patient input, he says. What are their personal goals? And what kind of treatment plan can be developed that will enable them to meet those goals?

Another advocate for increasing awareness about palliative care is Dr. Timothy Ihrig, Chief Medical Officer for Crossroads Hospice & Palliative Care (full disclosure: a SPRYTE client).

Dr. Timothy Ihrig

Dr. Ihrig is an internationally recognized expert on hospice and palliative care and a longstanding advocate for treating patients with life-limiting illnesses according to their individual priorities and life goals – incorporating full transparency and quality of life as key values in their care programs.

 

His TED Talk, “What We Can Do to Die Well,” urges doctors to focus not so heavily on clinical interventions at the expense of overlooking patients’ overall quality of life and helping them navigate serious illnesses from diagnosis to death with dignity and compassion.

According to Ihrig, at its best, palliative care is meant to be an empowering force for patients, taking into account each patient’s perception of what it means to live with a severe, chronic, potentially fatal condition and helping them live their lives with the highest quality possible.

Improving Education

Both Drs. Barile and Ihrig believe more needs to be done to incorporate end-of-life issues into medical training, so healthcare professionals can better recognize what is happening to their patients. Better training will also enable them to communicate more effectively with their patients, help them achieve informed consent in their decisions, and mutually agree on a treatment program that will meet patients’ personal goals while providing a better quality of life.

“We need to work on the language for end-of-life care,” Dr. Barile says, noting that news stories about former First Lady Barbara Bush reported that she had “stopped treatment.”

“Palliative care is a treatment. But the range of treatment options available to patients needs to be better explained,” he says.

More Cost Effective

There’s an added benefit. According to a study publishd in April by the journal JAMA Internal Medicine, patients with serious or life-threatening illnesses who have palliative care discussions with their doctors at the beginning of treatment focusing on improved quality of life, managing pain and defining goals often experience shorter hospital stays and lower costs.

The JAMA study found that overall, for patients who received palliative care, hospitals saved an average of $3,237 per patient over the course of a hospital stay compared to patients who did not. Hospitals saved an average of $4,251 per stay for cancer patients, compared to an average of $2,105 per stay for non-cancer patients.

Their conclusion: “Increasing palliative care capacity to meet national guidelines may reduce costs for hospitalized adults with serious and complex illnesses.”

Higher quality care with lower costs. Perhaps an idea worth looking into.