Hospice? But I’m not dying yet!

Through my work as a Hospice Social Worker, I’ve talked with many people about the myths and facts of hospice care. These include:

MYTH: Choosing hospice means your death is just around the corner.

FACT: An American is eligible for hospice under three conditions: they (1) are eligible for Medicare Part A, (2) choose comfort care over diagnostic or curative treatment, and (3) have a prognosis from a qualified medical provider of six months or fewer to live without any curative treatment. The third condition is important. A person can be on hospice for as long as it takes to die provided their health condition shows a consistent decline; just because a medical professional assesses you as having six months or fewer to live, doesn’t mean you won’t live longer. Hospice entities are required to regularly evaluate a patient’s decline; if there is clear documentation of a continued decline, the patient can continue to receive hospice care until the time of their natural death. The longest I’ve seen a patient on hospice was more than six years.

MYTH: Hospice actually kills people.

FACT: If you elect to go on hospice, you are electing comfort care over diagnostic and curative treatments. This means choosing for your terminal illness to follow its natural progression towards death. Nearly everyone who choose hospice dies with support from the hospice care team, but the team doesn’t kill the patient. The team simply provides supportive comfort care to the patient and their loved ones until they die. This includes administering medically approved medication for symptom relief, providing home health supports to help keep the patient comfortable, and providing psychosocial care to help alleviate emotional or spiritual distress. These services are provided with the goal of maximizing quality of life for people with terminal disease, rather than prolonging suffering. In fact, some research shows that people who choose hospice actually live longer than people with a terminal illness who don’t.

MYTH: Hospice is expensive.

FACT: The hospice medical benefit typically costs a patient nothing, provided the patient receives care through an approved hospice agency. Hospice agencies must provide all comfort care, including medication, care supplies (including disposable briefs if needed), durable medical equipment (like hospital beds and wheelchairs), as well as staffing at no charge to the patient or their family. Home-based hospice care typically cannot offer 24/7 nursing care, so patients who need this kind of support may need to pay for this level of support out-of-pocket. Hospice also does not pay for assisted living or nursing home fees. If a patient’s pain cannot be safely managed at home, the patient may also be eligible for care in a hospital or hospice house setting at no charge to them.

MYTH: Hospice means no more medical care, including no more access to your doctor.

FACT: Hospice patients typically receive medical care focused on providing them with comfort from pain and suffering. This can include administration of safe dosages of medication, wound care, and management of medical devices. Medical care for hospice patients is typically administered by nurses under the supervision of a medical director, who works in partnership with a hospice attending provide—often a primary care doctor or specialist who has treated their terminal illness—chosen by the patient or their designee. Patients can typically see their hospice attending provider as often as they want while still on hospice care. While hospice patients are often encouraged to stop treatment for unrelated health conditions that are not related to their terminal illness, there is an option to continue treatment provided the patient signs an ABN form (advanced beneficiary notice of non-coverage), indicating they know they need to pay for this care using their own money or an alternative form of insurance coverage. In addition, patients can revoke hospice at any time if they decide they do want to proceed with curative or diagnostic treatment for their terminal illness or any other medical condition.

MYTH: Hospice means giving up your home and moving to a facility.

FACT: Hospice care is often provided where the patient lives, whether this be a private home or a long-term care (LTC) facility. Some hospice entities have hospice houses, which are facilities designed to provided supportive care in a 24/7 care facility. If a patient’s pain cannot be safely managed at home, the patient may also be eligible for care in a hospital or hospice house setting at no charge to them. This inpatient care may be temporary, until their condition is stabilized, or continue until their natural death. Many hospice houses also give patients the option to choose care in the hospice house for a fee, if this is where they would prefer to live until their natural death.

Please don’t let hospice frighten you. In fact, in my experience, the people with a terminal illness who choose hospice earlier in their natural disease progression have the opportunity to maximize quality of life right up until death. This typically includes bringing closure to their significant relationships, helping their loved ones prepare to manage their estate after their death, and documenting and sharing their legacy so the impact of their life meaningfully continues even when their bodies are gone.

If you want help answering your questions about hospice, or preparing for your hospice experience, please reach out. EOL Blueprint Advisors can help.