Hospice Is Often Misunderstood: What Is It, and Who Is It For?

As the health care open enrollment season is upon us, it’s an ideal time to discuss end-of-life issues with our aging loved ones and explore plans that best meet their needs. Though discussing advanced illness and planning, including hospice care, can be scary and uncomfortable, having a proactive plan in place can ease the process down the road and help alleviate stress during a difficult time.

Many of us neglect end-of-life preparations until difficult decisions must be made or it is too late. According to an Ethos survey, fewer than half of Americans have discussed preparing for the inevitable with loved ones despite recognizing the importance of having a plan in place. Establishing a plan for our loved ones will help them take control of their lives as they age and empower them to make the right decisions for their unique situations. As we explore all health care options and benefits, we must reframe our thinking of non-traditional care like hospice, which is often misunderstood or not considered an option early on. We owe it to our loved ones to remain open-minded and do what is best for them.

What is hospice care?

Seeking hospice care does not mean giving up on life, as far too many families think. Instead, hospice means giving a loved one in-home comfort and care — often for an extended period. Indeed, those who choose hospice care have a longer life expectancy, better mental health and are more comfortable than they would be going in and out of a traditional hospital environment. Often, families regret not choosing hospice sooner due to its comfort, flexibility and affordability. Just look at former President Jimmy Carter. He has been in hospice care for 10 months and was recently seen taking a car ride at a community festival on his 99th birthday. His wife, Rosalynn Carter, recently passed away in hospice care at the age of 96. She will be remembered for her advocacy in mental and women's health during her tenure as the first lady.

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Hospice care is an underutilized and often misunderstood option that can relieve patients and caregivers of their burdens. Nobody deserves to go into it alone due to the skeptics of pricing or lack of information. According to Hospice Analytics, among the 50 states and the District of Columbia, our nation’s capital ranks the second lowest for the utilization of hospice care.

As people navigate open enrollment season and research health care options for their loved ones, they should be aware of common misunderstandings about hospice care that hinder a better quality of life for many patients with advanced illness and their caretakers. Despite increasing life expectancy and greater use of hospice services in recent years, it’s best to know your options when determining end-of-life care.

Who can you talk to about hospice care options?

When considering hospice care, it's best to talk options with your physician or health care provider for referrals or to discuss different options. A survey by Capital Caring Health and WebMD showed that 90% of people prefer to remain in their homes during the last stage of life. However, caregivers are often unprepared to provide the necessary home care, leading to hospitalization. While hospital care may be suitable for some at the end of life, it may not be the best option for many.

People think hospitals inherently provide superior care. While hospitalization may benefit some, hospice is a great option for those seeking personalized care. Experienced medical personnel and care teams are dedicated to meeting the physical, emotional and spiritual needs of the patient and their families. A hospice team can provide a range of support, including administering medicine, managing symptoms like pain or anxiety, offering counseling sessions, picking up groceries, preparing special dietary meals, assisting with family gathering logistics or doing household chores.

Once your physician makes a referral, you can make an appointment with a hospice provider to schedule an evaluation from an admissions nurse and create a plan of care based on the patient’s and family’s needs and wishes. After admission paperwork is signed and a plan of care (POC) is made, patients can start hospice soon after.

What can be included in a plan of care (POC)?

An individual POC is a roadmap that reflects the patient’s and family’s goals as they pertain to the terminally ill individual to include emotional, physical and spiritual support. The POC should consist of a living will and power of attorney for preferences on medical decisions, funeral arrangements and other medical directives to be written to safeguard patient wishes following their passing.

Who can qualify for hospice care?

Ultimately, it is up to the patient and their loved ones to decide what’s best for them. However, they have support from hospice care providers and physicians when making these difficult decisions. Typically, the hard decision of hospice care is determined with the help of a physician based on a patient’s life expectancy or prognosis rather than age.

In general, hospice care is the recommended course for patients of any age with a life expectancy of six months or less or when all other medical options have been exhausted for treatment.

Is hospice care affordable?

Despite what many assume about the cost of hospice care, it’s generally an inexpensive alternative to repeated hospital stays. In fact, hospice is often available to the patient at little or no cost.

Most Medicaid programs and other types of insurance cover hospice care.  Medicare Part A hospital insurance entitles a patient to start hospice care by actively opting in for the benefit, with no additional expense or a small co-payment. Even if an individual has no health insurance, donor contributions and grants often cover the costs. Adversely, the average hospital stay for Americans is 4.6 days, with an average cost of $2,883 a day, totaling $13,261.

Amid the 2024 open enrollment season, it is a good time to create an end-of-life plan for our loved ones, especially family members who may have one or more serious medical conditions. Everyone deserves to live their end-of-life journey with dignity and personalized, holistic care regardless of their background or financial situation. An established plan that minimizes worry and allows patients and their caregivers to enjoy time with one another is the greatest gift we can offer our loved ones.

Sharon Collins Casey is the Chair of The Washington Home Foundation, and Tom Koutsoumpas is the Chair of Capital Caring Health and CEO of National Partnership for Healthcare and Hospice Innovation. Both nonprofit organizations serve the Washington, D.C., metropolitan region.

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