Social determinants of health (SDOH) have long been discussed in the context of improving population health and lowering healthcare spending, but what do they mean at the end of life? More than you might think.
The CDC breaks down SDOH into five broad categories:
Disadvantages in these areas are thought to account for up to 60 percent of overall health outcomes. Of course, by the time patients are eligible for hospice, their overall health outcomes are inevitable. However, social determinants can still impact a number of measures in hospice, as well as hospice utilization itself.
Low income patients face unique challenges to accessing hospice, particularly when it comes to care in the home. A broken furnace, lack of air conditioning, or pest infestations can all limit the ability of patients to be cared for in the home. So can the ability to afford needed home modifications, which are not covered by Medicare. That’s part of the reason lower income is associated with a higher likelihood of a hospice patient being transferred from a home setting. Hospices can turn to government programs, community organizations, or their own charitable resources to help with these barriers. As of 2019, Medicare Advantage plans are also able to provide more non-medical supplemental benefits to address these needs.
Education Access and Quality
Lower educational attainment is associated with lower (and later) hospice utilization. It may also limit the ability of patients and caregivers to understand and follow written directions – a challenge even for highly literate individuals in stressful situations such as end-of-life care. Misunderstandings of directions, particularly around dosing instructions can lead to a poor patient/caregiver experience, inadequate symptom management and even emergency room visits and hospitalizations. To prevent these outcomes, hospices should provide instructions written at or below a fifth-grade reading level with clear illustrations. Nurses should also take time to ensure that caregivers understand all directions.
Health Care Access and Quality
For many Americans, the impact of poor access to healthcare extends to the end of life. These patients may be less likely to receive end-of-life counseling from providers. They may also lack trust in the healthcare system as a whole and be less comfortable electing hospice. Hospices with a strong connection to the communities they serve are more likely to reach these patients. Marketing efforts and referral relationships aimed at underserved communities can also help. Some hospice organizations may also choose to build capacity in low-income areas, especially rural ones, that often have limited access to quality end of life care.
Neighborhood and Built Environment
Much of our health is determined by the physical environment in which we live. Air pollution and access to fresh food are two factors that can continue to affect patients at the end of life. Some neighborhoods present challenges to hospice providers as well. Remote, isolated urban areas require additional travel time and reliable vehicles. Areas with high crime rates can make it difficult to recruit employees and ensure their safety. Many home care organizations provide enhanced training to help staff better observe their surroundings and may advise staff to “dress the part” in scrubs and visible ID badges to avoid being targets of crime. The same type of cellular alert bracelets often provided to seniors can also be used to connect staff to a dispatch location. In extreme cases, employers may choose to provide door-to-door transportation to client homes.
Social and Community Context
Social and community context refers to our relationships and support system. Neighbors, religious and cultural institutions, community organizations and workplaces all play a role. These relationships often become frayed as we age, particularly if health challenges leave us homebound. Lower income individuals often report experiencing lower levels of social cohesion at all stages of life, so they may be especially isolated at the end of life. Hospice volunteers play a special role when it comes to patients experiencing isolation. Hospices can also help leverage strengths within a patient’s community and help reestablish connections to churches, senior centers and other community groups a patient may have lost touch with due to extended illness or disability. These efforts can have a huge impact on quality of life, even reducing the severity of pain and other symptoms.
There are a variety of interventions hospice leaders can take to help limit the negative impact of SDOH at the end of life:
- Work to increase awareness of SDOH among staff and volunteers.
- Build long-term relationships within underserved communities.
- Leverage community resources to support patients’ non-medical needs.
- Be willing to challenge and change standard operating procedures to address disparities in hospice access, patient/caregiver experience and overall quality of life.
- Enclara’s recent whitepaper, Equity on Palliative Care and Hospice, is a great resource to start a conversation at your organization.
- Disparities in SDOH and increased experience of trauma often go hand in hand. Get an overview of how clinicians can help with our 2019 Palliative Pearls case study, Trauma-Informed Care Awareness.