How Home-Based Palliative Care Teams Help See the Big Picture

Throughout the health care community, there is increasing recognition of the significant impact of social determinants of health (SDoH) on individual health and quality of life. COVID-19 has exacerbated social isolation and loneliness, limited food access, and highlighted financial, housing and employment insecurities and transportation issues. For people with serious illnesses, COVID-19 has a significant impact on SDoH. Moreover, social distancing measures have created additional social barriers to healing for those living at home.

Fortunately, there are a growing number of nonmedical initiatives emerging to address the broader social and environmental factors that influence health that are focused on care in the home. One example is the role of home-based palliative care (HBPC) to provide support to people with serious illness and their caregivers.

A Broader View

Recent studies estimate that health behaviors shaped by social and economic factors are responsible for up to 80% of any health outcome. This explains why evaluating patient risk based upon clinical factors, comorbidities and claims history alone often falls short in effectively addressing sentinel events that involve nonclinical issues such as SDoH. We need an approach that includes individual level information about SDoH and recommendations tailored for each patient to address social and economic needs.

Palliative care is specialized medical care for people living with a serious illness that focuses on providing relief from symptoms and stress to improve quality of life for both the patient and their family. HBPC teams take a holistic person-centered approach that assesses demographics, SDoH and clinical history to develop a plan of care for the seriously ill patient and their family.

This approach aligns with the Department of Health & Human Services initiative called Healthy People 2030, a directive to address the most critical public health priorities and challenges in the United States over the next decade, which includes—for the first time—SDoH.

The Role of HBPC Teams

HBPC providers are in a unique position to see first-hand the impact that social barriers and behavioral health conditions have on the patient experience—specifically those coping with serious illness at home.

Given the complexity of the health care and social service systems, and the complexity of individuals with SDoH needs, there’s a great benefit from the support provided by HBPC team members who help them manage and coordinate their care and serve as advocates when necessary. HBPC clinicians develop trusting relationships with the patients and their caregivers, address their goals and connect them with the clinical and social services they need. These interventions serve to fill gaps in care to improve quality of life and health outcomes, reduce acute care utilization and readmissions, and decrease caregiver stress.

Interdisciplinary palliative care team members are trained to help identify and resolve the social, financial, environmental and emotional challenges that patients and caregivers face, and they have the skills to find resources, coordinate care and enhance communication among the patient, health care provider, case worker and anyone involved in the patient’s quality of life.

Critical Factors of SDoH & Successful Solutions

Too often, social factors, which vary across individuals, populations, social status, life expectancy and types of diseases, can lead to health inequalities, especially for those with low socioeconomic status. One survey shows that 68% of patients face at least one barrier related to social determinants. Of these, 57% have a moderate to high risk for financial insecurity, isolation, housing insecurity, transportation and/or food insecurity. Here are some of the most significant factors:

1. Social Isolation or Loneliness

Without significant social connections, people experience a reduced sense of well-being, a fact that has been recognized around the world as an emerging health issue. In fact, multiple indices on world happiness suggest that social connection plays a significant role in both subjective happiness and long-term well-being.

Nearly 20% of Americans over the age of 50 experience social isolation and social isolation worsens as people age. The primary risk factors for social isolation include having a mobility or sensory impairment or caring for someone who does. Other contributors are living alone, experiencing major life transitions and having a low income. While the obvious impacts of social isolation are psychological, the physical health consequences can be staggering. Loneliness is increasingly seen as a risk factor for multiple negative health outcomes.

Given the further isolation and uncertainty created by the COVID-19 pandemic, seriously ill individuals have even greater need for personalized support and information from healthcare organizations they can trust.

Patient Challenge:

BT is an 84-year-old man who lives alone and has no family or close friends. Although he meets eligibility for hospice, he is not yet ready to enroll. He is frail and ill. His HBPC nurse is concerned about him falling or declining rapidly while home alone. Telephone calls go unanswered because he does not like to talk on the phone, stating it “tires him out.”

Solution:

His nurse shared her concerns with him. He now texts her every morning to tell her “Good morning! I am okay!” The nurse replies each day and asks if he needs a visit. If she is unable to reach him, she drives by his home. The team is respecting his communication preferences and the nurse has formed a trusted relationship with Mr. B. that allows ongoing monitoring and support.

2. Food Insecurity

While hunger is not a new issue in the United States, the pandemic has provided an alarming wake-up call about how fragile food security is for millions of Americans. According to the U.S. Department of Agriculture, 37 million people were living in food-insecure households in 2018. Since the start of the COVID-19 pandemic, an estimated additional 17 million people now face food insecurity in 2020—raising the total to a staggering 54 million Americans.

Patient Challenge:

MB is a 69-year-old woman who lives alone with amyotrophic lateral sclerosis, a progressive motor neuron disease. The HBPC care team coordinated service for Meals on Wheels to be delivered to her. During the pandemic-related lock down, the team also called her weekly to monitor her fragile health status and assess any new needs. During one of these calls, the team learned that Meals on Wheels had discontinued providing meals due to the pandemic.

Solution:

MB’s HBPC social worker arranged a family meeting over the phone with her and with her estranged family to request support to obtain groceries and meal delivery. During the call, her grandson agreed to pick up groceries and drop off food for her.

3. Lack of Reliable Transportation

Transportation issues include lack of vehicle access, inadequate infrastructure, long distances and lengthy times to reach needed services, transportation costs and adverse policies that affect travel.

Transportation barriers to health care access are common—and greater for vulnerable populations. Transportation access is essential for ongoing health care and medication access, particularly for those with chronic diseases.

Each year, 3.6 million people in the United States do not obtain medical care due to transportation issues, and report things like missed or delayed health care appointments, being unable to fill a prescription, increased health expenditures and overall poorer health outcomes.

Patient Challenge:

RD is a 69-year-old man with chronic obstructive pulmonary disease who lives alone. He was set up to receive his medications from a local big box store but found himself without transportation to pick them up. He was stressed by the situation and began “rationing” his medications while struggling without success to find someone to drive him to the store. His inability to comply with treatment led to an unnecessary emergency room visit and long hospital stays.

Solution:

The HBPC team put a Pill Pak mail delivery service in place for home delivery of RD’s medications, which made it easier for him to adhere to his medication regimen.

Addressing SDoH

The best HBPC solutions are designed to motivate patients and caregivers to be fully engaged in choosing and implementing a plan of care that optimizes their quality of life and results in treatment decisions aligned with their goals, preferences and values. Assessing and addressing SDoH is a critical part of that process.

Using structured assessments that include screening questions for SDoH, HBPC team members can assess the issues, provide education and support, initiate referrals to community resources and communicate assessment findings and the plan of care directly with a patient’s health care team and home health
care providers.

HBPC nurses and social workers who make home and telehealth visits are instrumental in proactively managing the patient’s condition and symptoms—and helping to avoid the need for unplanned care.

During home visits, these palliative clinicians provide the “eyes and ears” to discover what is really going on inside the home—ranging from the problems of food inadequacies and accessing transportation to housing insufficiencies or identifying and addressing other concerns, such as social isolation and depression.

The teams develop a trusting relationship that enables them to understand the patient’s physical and mental health and spiritual and emotional needs. They provide ongoing psychosocial support and help patients and their caregivers understand their illness and the goals of care. They arrange for community-based resources, such as transportation and meal delivery, assist with utility and grocery bills, ensure prescriptions are filled, and arrange for in-home equipment; they also provide health coaching and care training to help patients remain safe at home and reduce caregiver burden. The team also assesses the need for skilled nursing services through home health agencies, home modifications and home medical equipment to promote safety and independence.

Understanding Environmental Factors

Some of the new population health HBPC programs collaborate with health plans to identify and engage members who are living at home and struggling with multiple clinical and nonclinical issues. As the above patient stories indicate, this approach can make a significant difference in the lives of patients by addressing their SDoH issues, improving the patient experience and positively impacting outcomes.

For each patient above, these simple solutions prevented issues stemming from SDoH from evolving into more costly clinical issues, and resulted in more compassionate, affordable and sustainable care. HBPC programs not only address SDoH but also support advance care planning and reduce acute care utilization and overall medical costs.

The significant unmet needs of this high-need, high-cost population and the known health and financial benefits of HBPC are likely to spur expansion across the country. During the COVID-19 pandemic and beyond, this approach offers considerable value for patients and caregivers, as well as the practices and payers that offer this level of supportive care.