Understanding Hospice Care

“You matter because of who you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully but also to live until you die.” —Cicely Saunders, founder of modern hospice

While many have experienced or interacted with hospice in some form, ask anyone to explain how it works, and you’re likely to get a wide array of answers. That’s because hospice can be many things, depending on the needs and circumstances of the family.

The word hospice comes from the Latin Hospitum, meaning hospitality. In its simplest definition, hospice focuses solely on end-of-life care for someone with a terminal illness. The goal is not to treat illness, nor is it to hasten or postpone death. Although the concept of treating the terminally ill dates to the 11^th century, modern hospice as we know it is largely accredited to the work of Cicely Saunders, an English nurse, social worker, physician, and writer.

Deciding to start the hospice process is a difficult and deeply personal decision. The process may begin with a referral from a primary care doctor or specialist. Other times, the patient or family may be burdened with starting the conversation for end-of-life care. Regardless, it’s essential to ask questions and ensure you have a clear understanding of the road ahead, including the financial aspects.

What Does Hospice Look Like?

In my own life, I watched as my family navigated care for my two grandmothers, Patty Jean and Lois. These two incredible women died years apart, with different circumstances and very different forms of care through hospice.

Hospice care can take many forms, both in the home and through in-patient care. Care can range from short-term respite care to allow friends and family much-needed time away from caregiving to months-long stays with in-patient programs. In-patient programs include dedicated hospice facilities, hospitals, nursing homes, assisted living centers, and other healthcare systems. There are a number of different organizations that provide hospice care in Florida and across the nation. These providers can be for-profit or not-for-profit.

Care is most often administered in the home, as was the case for my nana, Patty Jean. As she entered the final months of her battle with colon cancer, a team of hospice nurses moved her into my parents’ home. They were available 24/7 via telephone and made regular visits to our house to see about her comfort, provide medication and other services, and consult with my parents and family.

Years later, my grandmother, Lois, would enter a local hospice care facility where she received around-the-clock care from a team of doctors and nurses. She would later be able to transition back into her own home, where she spent her final weeks surrounded by family and, again, a dedicated hospice staff.

Regardless of where the care is provided, the team is typically spearheaded by a primary caregiver. This person is most often a family member or close friend. The American Cancer Society notes that this person is charged with working with the hospice team and the patient to develop a care plan based on the patient’s specific needs and preferences. The team can be made up of doctors, nurses, social workers, counselors, dietitians, home health aides, and trained volunteers.

Who Pays for Hospice?

When the time comes to choose hospice care for a loved one, it can be overwhelming to think about the costs. While the amount depends on different factors, it can be a relief knowing that there are various ways to manage the cost, sometimes even being fully covered.  

• Medicare: Hospice care is completely covered by Medicare Part A, apart from copays for outpatient drugs and respite care. Medicare defines a hospice patient as someone with a prognosis of six months or less. Visit www.medicare.gov/coverage/hospice-care for more information.
• VA Benefits: The Department of Veterans Affairs covers hospice care for qualified veterans in the final phase of their lives, typically six months or less. More information can be found at https://www.va.gov/GERIATRICS/Guide/LongTermCare/Hospice_Care.asp.
• Medicaid: Coverage can vary from state to state. The state of Florida does provide coverage for hospice services for those that qualify for state Medicaid insurance. For details, go to https://www.medicaid.gov/medicaid/benefits/hospice-benefits/index.html.
• Private Insurance: While coverage through private insurance can vary greatly depending on the plan, the American Cancer Society states that many work-based and private insurance plans provide at least some level of coverage for hospice care. It’s best to review the individual plan to determine available coverage. 
• Other Coverage: Some providers, typically non-profit organizations, can offer services based on the ability to pay, sometimes at no cost.

If you’re walking through this with a family member or friend, know you’re not alone. Don’t hesitate to consult your Resource Consulting Group advisor for resources or help to better understand the hospice options available.