Many patients who discontinue curative treatments don’t take advantage of hospice care, even with a doctor’s referral. While hospice referrals appear to be increasing, one out of 10 referrals still never receive care within 30 days of discharge (source: Trella Health). Why is that?

During one of the most stressful points of life, patients and caregivers are often thrust into a world of new terms, unknown providers, and lots of questions. Beyond patient and family wishes surrounding death and dying, two major system-wide factors impact hospice and comfort care: 1) poor health literacy and 2) social determinants of health. Exploring these concerns and finding solutions is vital to a positive hospice experience. 

Health Care Literacy

While hospice knowledge has come a long way in the health care sector, long-time hospice advocate Edie Avery said there’s still a lot of work to do in educating families and physicians, plus improvements for end-of-life care. First, health care literacy can be a stumbling block to taking advantage of hospice care and benefits.

Hospice News shares this definition: “Health literacy is the degree to which individuals can obtain, process and understand basic health information and services needed to make appropriate health decisions, according to the Institute of Medicine.” Health care is a unique language, even for those who are literate and well-educated. Less understanding often results in either a delay in hospice care or not getting it at all.

“We have to help families and doctors see that optimism is not just found in healing, but in giving the best quality of life,” said Avery. She had a long career in hospice care, from nursing to a founding hospice administrator after Medicare approved the hospice benefit in 1982 to a clinical affairs executive in a large hospice organization.

Many patients with a long treatment plan, like chemotherapy, have likely learned “healthcare lingo” and how to overcome roadblocks in the system. Moving to hospice may be an easier transition for those types of patients, said Avery. But when a patient is given a six-month life expectancy, she added, “They are in shock and are often not prepared. They reach a crisis point and have to reorient their whole way of thinking.”

Doctors provide discharge instructions, but ensuring patients follow them after post-acute care can be tricky. What are some ways to improve health care literacy among patients? Solutions include:

  • Simplifying medical instructions for patients and caregivers, including format and language.
  • Explore the patient’s and their family’s needs, fears, goals and the tradeoffs they are willing to make to achieve those goals.
  • Identify barriers a patient may face to accessing prescribed post-acute care.
  • Doctors and providers evaluate not just the health of the patient, but their understanding of the next steps and their responsibilities (e.g. choosing a hospice provider), plus following up with patients on discharge orders.
  • Education for physicians and other providers to refer to hospice or other home health needs. Doctors need to understand and communicate the transition of care from curative measures to valuable comfort care.
  • Strengthened referral partnerships, like those between primary care doctors, hospitals, or residential facility physicians and hospice providers.

Hospice referrals are most often provided by a primary care doctor, hospital doctor, or residential nursing facility physician. Some hospice companies are in partnership with hospitals, but patients also have a choice on which company to choose. 

Once a hospice provider is hired, like Heart to Heart Hospice, a team comes in to guide the family in all aspects of care: medical, emotional, social, spiritual, and relational. The hospice team carefully bridges that knowledge gap and helps families outline their wishes to set up an individualized care plan. Avery said the team approach provides a safety net for a patient going home, plus support for the caregiver and patient.

“Families are relieved that hospice is there to walk with them in the toughest time of their lives,” said Avery.

Social Factors Impacting Health

Non-medical factors (often called social determinants) also influence the outcome of each hospice experience, such as lack of insurance coverage or transportation, poor nutrition, inadequate housing, and lack of social or caregiver support. 

While Medicare benefits include hospice coverage at little to no cost for patients (a benefit put in place in 1982), patients have the right to choose their own Medicare-approved contracted hospice company. However, a patient may be too sick or weak to coordinate hospice care, and gaps in other areas may cause a lapse in getting the hospice care they need.

A doctor’s referral is not the only determinant of a successful hospice experience. If the patient doesn’t have a good support system or a home that’s conducive to caregiving, for example, families may miss out on months of benefits, face more hospitalizations, and delay needed comfort measures. They may worry about finances or having the physical strength needed to provide in-home care or coverage if a family caregiver needs to work outside of the home.

Avery offers reassurance that hospice teams help families address these concerns, whether it’s tapping into extra programs like veterans’ aid, social programs, or scheduling volunteers. “We can help cobble out a plan together with the families, to help spread out the care,” she said. Their expertise lends a voice of reason during a stressful time.

For example, 24-hour caregiver coverage is not a covered benefit in most cases (with exceptions for short-term medical crises or respite care when the caregiver needs a break). But if families need help, for example, hospice staff can gather the patient’s adult children to help map out possibilities, like pooling finances for an 8-hour overnight caregiver. Helping families understand the nature of hospice care is often clarifying and freeing.

On a systemwide basis, how can social determinants be addressed for hospice patients? Experts suggest:

  • Hospice providers building community partnerships to address nonmedical needs at home.
  • Improved communication and coordination between referring physicians and families to hire a hospice provider.
  • Hospice providers continuing to bolster support for patients’ nonmedical needs, including social workers, chaplains, and more.
  • Changing the insurance model to allow coverage of hospice-specific supplemental benefits to address social factors.

Better outcomes, less hospitalizations, and home-based care are not just good for families, but result in reduced societal health care costs overall. From pain relief to fulfilling last wishes to guiding final conversations, hospice provides a needed service on life’s journey. 

“Nobody is giving up. Everyone is making whatever life you have left the best it can possibly be,” shared Avery. “Families often say, ‘Thank you for giving us the gift of caring for my mom as she wanted to be cared for.’” 



Why Some Referred Patients Never Make It to Hospice, Hospice News

The Case for Integrating Social Determinants Into Palliative Care, Hospice News

Palliative Care Well-Poised to Address Social Determinants of Health, Hospice News