Iris Mini: Understanding Hospice Services

What is Hospice?

Hospice is a medical service that offers treatment focused on pain, symptom management, and coordination of care for those in the last phases of a life-limiting illness. Hospice recognizes death as a process that all humans will experience and seeks to support end-of-life and make it as comfortable as possible. Due to this philosophy, hospice services seek to affirm life as it is being lived during the final phases of a life-limiting illness, while neither hastening nor postponing death.

What Services Do I Receive When I Enroll in Hospice?

Services vary slightly based on the hospice program. In general, hospice offers pain and symptom management, 24-hour on-call service, in-person visits, medical equipment, spiritual care, bereavement, and counseling services. Hospice helps with end-of-life planning, including connecting people with legal support, funeral planning support, how to plan for increased care needs, and how to maintain as much dignity as possible with the people around them while providing the kind of care they want at the end of their lives.

What is the Difference Between Palliative Care and Hospice?

Palliative care is not the same as hospice care. Hospice is a subset and type of palliative care. Palliative care is care focused on symptom management and maintaining as much quality of life as possible while receiving care for a serious illness. A specific prognosis is not required to receive palliative care. People often receive palliative care alongside their oncology treatment.

When Would I Be Eligible to Enroll in Hospice?

To qualify for hospice a person must have a prognosis with a life expectancy of six months or less. Generally, a person must no longer be receiving cancer-focused treatment (chemotherapy, radiation, etc.) from their oncologist or other medical providers.

How Long Will I Be Enrolled in Hospice Services?

It is a person’s choice to enter or leave hospice services. Hospice supports a person through the end of life.

What Does Comfort Care Mean?

When discussing hospice, people sometimes hear that the focus will be on comfort care. This can leave us wondering, "Shouldn’t that have always been the focus?" The answer is yes, while optimally doctors and the care team should always focus on comfort, sometimes cancer-directed care causes discomfort. However, hospice emphasizes the focus on comfort care because they are a team that specializes in pain management and symptom control specifically when people are at the end of their lives – a time when comfort often matters most.

Where Will I Live When I Enroll in Hospice?

Hospice care can be provided in most care settings: home, hospice facility, skilled nursing facility, long-term care facility, assisted living facility, hospital, or group home.

Who Provides Hospice Care?

Hospice care is provided by an interdisciplinary team, which includes physicians, nurses, social workers, home health aides, spiritual caregivers, and volunteers. Some hospices have additional specialty services such as Reiki practitioners, massage therapists, music therapists, and child-life specialists. It is important to note that hospice does not cover hands-on caregiving and is not present around the clock. Families coordinate caregiving and either provide the care with hospice support or coordinate private-pay caregiving at home or in a facility.

How Often Will I Be Visited by Hospice Staff?

It can vary based on the healthcare needs of the person enrolled and program design. Typically, a hospice nurse visits at least once every 1 to 2 weeks, with increased frequency as care needs change. Visits from other team members will vary and are based on discussions about what is wanted and needed by the person enrolled.

Will Family and Other Significant People in My Life Receive Support?

Hospice nurses and social workers coordinate care and offer support to those closest to the person receiving hospice care. After death bereavement support is offered for at least 13 months in the form of check-in phone calls, visits, letters, and support group offerings.

Is the Oncology Team Still Involved in My Care Once I Enroll in Hospice?

The extent of care can vary by program. Typically the oncology team continues to be available as needed, while the hospice team is the primary resource and should be the first phone call made when there are questions or concerns.

How Much Will Hospice Cost?

Hospice is covered by Medicare part A, Medicaid, and most private insurers. There may be some medications, services, and/or equipment that are not included in the individual’s policy, and sometimes people still have co-pays. This coverage varies by insurance.

How Can I Find Out More Information About Hospice?

Discussions with your oncologist about hospice and its benefits can be a helpful place to start. If you have more questions, your oncologist may connect you with the oncology support team, which may include members from the palliative care team, spiritual support, and/or an oncology social worker to further explore your questions. Most hospice services also offer informational visits - a hospice nurse comes to the hospital or to your home to discuss services provided and answer all questions. Having an informational visit does not mean that you must enroll in hospice.

It can be helpful to process your thoughts and feelings with an Iris mental health therapist, who are trained social workers with specific expertise in the issues that people with cancer face.

What Is Hospice Care? (American Cancer Society)

Hospice Care (Caring Info)

Starting the Conversation (Hospice Foundation of America)

Hospice Directory (Hospice Foundation of America)