top of page
  • Writer's pictureCindy Davis

Closing Health Equity Gaps: Why You Should Lead Your End-of-Life Care Planning

Updated: Jun 4


Image of elderly Black man with his doctor

Continuing our "Ensuring Health Equity: Closing the Gap" series, this third post covers the unique challenges faced by minority communities in having meaningful health care discussions with their doctors. We'll discuss reasons why many providers are hesitant to initiate goals of care conversations and existing institutional barriers.

 

At the end of the day, it isn't about waiting for the healthcare system to change; it's about understanding what you can do to navigate it better and assert your right to choose, right to care, and right change your mind with greater knowledge.

How does mistrust and access affect healthcare delivery?

Particularly when dealing with a serious illness, your previous encounters with the healthcare system can significantly influence your decisions and perceptions. According to the Agency for Healthcare Research and Quality, as a member of the Black or Hispanic community, you may have been offered fewer preventive care options, experienced lower quality of care, and faced major barriers to accessing necessary services.

“In the life-and-death world of medicine. African-Americans and other marginalized people are granted fewer procedures and poorer-quality care than whites across every therapeutic intervention said Williams, who specializes in biases in public health. Of the sixty most common procedures reimbursed by Medicare, he said, “African-Americans receive fewer procedures than white patients even though they have higher rates of illness.” The only procedures that African Americans receive at higher rates than whites, Williams said, are shunts for renal disease, the removal of stomach tissue for ulcers, leg amputations, and removal of testicles.” ~ David R. Williams, Harvard sociologist

Access to care also plays a big role in shaping the healthcare experience for minority communities, often dictating the range and quality of your options. In both rural and urban settings, the availability of long-term care facilities like hospices and nursing homes or home health care varies, with predominantly White areas frequently having more and better options. Such disparity leads to a lower utilization of alternative services and greater reliance on emergency rooms.

 

Consequently, in a crisis members of the minority community may request all possible care regardless of its impact on your quality of life, believing that any treatment withheld is a sign of subpar care. This response is not surprising, given the history of perceived and actual inequalities in healthcare.

“In the United States, from slavery well into the twentieth century, doctors used African-Americans as a supply chain for experimentation, as subjects deprived of either consent or anesthesia. Scientists injected plutonium into them, purposely let diseases like syphilis go untreated to observe the effects, perfected the typhoid vaccine on their bodies, and subjected them to whatever agonizing experiments came to the doctor’s minds.” ~ Isabel Wilkerson, Caste: The Origins of Our Discomforts

Further complicating matters for members of the Black community is a belief that completing an advance directive might limit access to your rightful care and lead to receiving poorer-quality medical treatment. Such fear can deter your engagement in these discussions. Researchers point to a notable gap in the information provided to minority communities about possible treatments and end-of-life care choices. Being less informed about the various options means that you’re making decisions without a full understanding of the potential services that could provide comfort and dignity in the final stages of life.

 

Mistrust in the healthcare system and lack of access are valid concerns. Actively seeking to understand healthcare system barriers and asking informed questions about your situation, available treatment options, and quality of life impacts can be the most effective way to close the health equity disparities gap in serious illness and end-of-life care.

Graphic with description of health equity, doctors and seniors

Why are healthcare providers crucial to ACP discussions?

Healthcare providers play a pivotal role in goals of care discussions, yet there is a significant communication gap that needs addressing. Many patients, perhaps including you, may prefer to wait for healthcare providers to initiate conversations about future care. However, statistics reveal a stark reality: only 7% of patients report that their doctors have ever discussed their end-of-life wishes with them.

 

Moreover, many adults who see the importance of advance care discussions express a desire for their healthcare providers to bring up the topic first during medical visits. Surprisingly, 60% of respondents who had not completed their ACP stated they would do so if their healthcare provider recommended it, yet 41% were unsure if their provider would suggest such planning. This passive approach can lead to missed opportunities for meaningful and timely goals of care discussions.

Doctor talking to cancer patient graphic asking to stop treatments

Given the confusion as to who is responsible for “The Talk,” waiting for healthcare providers to initiate ACP discussions may not be the most effective strategy. Instead, let’s explore what may be holding your healthcare providers from having these discussions so you’ll be better prepared to start the conversation and ask the relevant questions during your next appointment.

What barriers prevent physicians from having serious illness conversations?

Typically, three issues stop healthcare providers from engaging their patients and residents in serious illness and end-of-life care discussions, including:


  1. Training Deficiencies: Many clinicians lack proper training in how to conduct sensitive discussions about end-of-life care, leaving them unprepared to effectively navigate the nuances of your serious illness.

  2. Systemic Limitations: Institutional constraints within healthcare settings can exacerbate difficulties, limiting the time and resources available for comprehensive discussions about your options.

  3. Cultural Misunderstandings and Assumptions: Clinicians might not fully understand, appreciate, or explore diverse cultural values and ideals, leading to preconceived notions about your preferences, which may not accurately reflect your personal wishes.


Understanding healthcare provider limitations can enhance how you initiate and hold conversations about your long-term, emergency, and end-of-life health care. By delving more deeply into these barriers, you’ll establish context to help you advocate effectively for care that aligns with your values and meets your needs.

Physician Training Deficits in End-of-Life Discussions

Training deficits in how to conduct serious illness and end-of-life care discussions may prevent your doctor from beginning these conversations. Surprisingly, a 2016 survey indicated that 68% of physicians reported receiving no training in end-of-life conversations, highlighting a widespread lack of preparedness among healthcare professionals.


Graphic of doctor talking with elderly woman about her diagnosis

Medical students also report substantial gaps in their education, particularly in communication skills with terminally ill patients and handling advance directives. In a study involving 176 medical students, 58% felt their training did not adequately cover communication with terminally ill patients, and 60% reported a lack of focus on advance directives. This gap underscores a broader issue within medical training that fails to equip future physicians with the essential skills needed to navigate these sensitive areas effectively.

 

The uncertainty about when to start ACP discussions or how to handle prognosis adds to the hesitation among clinicians. This is especially true for those who feel they lack a deep understanding of the diverse cultural values and ideals related to death and dying. Such uncertainty can lead to concerns about causing distress to patients and residents by inappropriately addressing ACP or committing cultural faux pas, which can severely undermine the therapeutic relationship.

 

Cultural competence varies among physicians too. An American study found differences in how clinicians of different races approach end-of-life discussions. Some Black physicians noted they would approach these conversations differently with patients of their own race compared to those of a different race, although the content discussed would remain the same. Conversely, White physicians viewed these issues as universally applicable, stating that end-of-life considerations are "color blind" and should be handled the same way regardless of a patient's race.

 

Appreciating these training and cultural nuances is key, not to excuse the gaps, but to better comprehend why many healthcare providers might seem to avoid or are unprepared for these discussions. This insight challenges the common assumption that all doctors know everything and are comfortable with end-of-life conversations because that’s a part of their practice. It also shows that your perspective and preferences can be a valuable contribution to healthcare discussions; so, you should feel comfortable speaking up and sharing.

Time Constraints in Clinical Settings

Time constraints in clinical settings may also impact the quality and depth of goals of care and ACP conversations, with many healthcare professionals citing limited time as a major barrier. In one study, an overwhelming 91% of clinicians identified time constraints as a significant obstacle to completing ACP discussions.

 

Additionally, the feasibility of implementing culturally sensitive ACP interventions was questioned in another study, where healthcare staff viewed ACP as adding to an already heavy workload. The introduction of such interventions was seen as requiring extra resources to be effectively integrated into routine clinical practices.

 


Graphic of elderly patient expressing concerns to doctor before scan

For patients facing language barriers, the time needed to arrange for interpreters and communicate through them further exacerbates these time constraints. Challenges such as the availability of interpreters on demand and the accessibility of ACP resources in multiple languages or simplified versions for those with limited health literacy add layers of complexity to an already strained system.

 

This highlights the importance of notifying your healthcare provider in advance when scheduling appointments that you wish to have these conversations, ensuring they have ample time to arrange for translators, if needed. While it may be impossible to extend limited face-to-face time with your doctor, typically under 15 minutes, you can maximize the effectiveness of each visit. Preparing specific questions and concerns ahead of your appointment can help direct the conversation more efficiently. By being more precise rather than general in your queries, you can navigate the limitations of clinical interactions and derive greater benefits from the limited time available. This proactive approach empowers you to take charge of your healthcare discussions, ensuring that critical topics like end-of-life care are addressed comprehensively.

Taking the Lead in End-of-Life Care Discussions

Implicit biases and preconceived notions about patients' preferences can adversely affect how both informal and formal future care discussions are approached, potentially leading to unequal care provision. While it's unrealistic to expect your doctor to be deeply versed in every aspect of every community's culture, you can help by expressing what matters most to you and your community. Smart providers know minority communities are not monolithic; each individual's priorities and values can vary widely.

 

To advocate for the care you want, it's imperative you to actively engage in your discussions with your doctors and nurses, asking questions that resonate with your values and the cultural context important to you. This proactive approach helps bridge the gap between general medical advice and the personalized care you need, ensuring that your healthcare choices are informed, respected, and aligned with your beliefs.

Graphic of elderly Black man expressing frustration with medical system

If you’ve previously had bad experiences with the healthcare system, the last chapters of your life are a great time to reclaim the narrative to ensure it ends on your terms. In this situation, your best option is to educate yourself and your loved ones. Remember that it is through frequent, ongoing discussions with your healthcare providers about your goals of care that you ensure your voice is heard because you can be specific about what you want. That’s the real value in taking the lead.

Yorumlar


bottom of page