What is hospice care?

Hospice care is a specialized type of care that provides compassionate, nurturing support to terminally ill people in the final stages of an incurable disease. The focus is not on curative treatments, but on comfort care—improving the person’s quality of life by addressing physical, emotional, social and spiritual needs.

How is hospice care different from other forms of medical care?

When a terminally ill person chooses to enter hospice care, they are looked after by a specially trained team of health care professionals and caregivers who collaborate to ensure the person’s comfort and help them make the most of their time each day. The focus is on pain and symptom management, rather than on curing disease. A hospice team may include doctors; nurses or nurse practitioners; counselors; social workers; speech, physical or occupational therapists; hospice aides; and a chaplain. Family members and a primary caregiver are also important parts of the team and involved in all decisions around care and treatment. The goal is to make each day dignified and peaceful for the terminally ill patient.

When is hospice care the right choice?

Research shows that in many instances hospice care does not begin early enough. This may stem from a belief that choosing hospice care means giving up on living. In reality, many patients exceed their life expectancy because of the hospice support they receive, which may help lower anxiety and stress.

This type of care becomes an option when a terminal illness reaches a stage where medical professionals determine it cannot be cured with treatment, or it becomes an option when the terminally ill person declines aggressive treatment for their illness. Hospice care may be recommended when life expectancy is 6 months or less if the terminal illness were allowed to take its natural course.

Not all doctors will readily recommend hospice care as an option, but if medical treatments are no longer having the desired effect and there are no alternative treatments available, terminally ill patients or their family members can always initiate a discussion with the doctor around a change in approach. Those considering choosing hospice care should also discuss it with their loved ones to decide whether it aligns with their goals of care and is the right choice for them. 

What services does hospice care provide?

There are certain services that all hospice providers are obligated to provide, but each hospice provider takes an individual approach to their service, staff, and the types of support offered. 

Pain and symptom management

‍A hospice treatment plan must include all reasonable and necessary services and medications to relieve pain and manage the symptoms of the terminal illness and related conditions. Equipment and supplies are provided based on medical need.

Hospice team

Hospice patients will have a nurse, chaplain, social worker and hospice medical director assigned to their care team. Most patients also have the option of a certified nursing assistant to aid in personal hygiene services.

Volunteer program

Hospice programs are also required to have a volunteer program that provides additional companionship for patients in their home.

24/7 assistance

‍All hospice programs have a nurse available 24 hours a day, 7 days a week, to discuss any issues or address any crises that might arise with the patient. If needed, a hospice team member will visit the home at any hour to manage a crisis to keep the patient from being sent to the hospital.

Where is hospice care provided?

Most hospice care occurs in the home with a primary caregiver and family members providing daily care. The primary caregiver is most often a family member but can also be a friend or a hired caregiver. Hospice care may also be provided in a facility such as a nursing home or assisted living. In rare instances, hospice care may also be provided in an inpatient hospice or a hospital.. In these cases, the hospice team will organize the required inpatient care and maintain an active role in care planning.

Coordination of care by the hospice team

Choosing hospice care means there will always be someone on-hand to help at a moment’s notice. The hospice team is responsible for coordinating care 24 hours a day, 7 days a week, and ensuring information-sharing with all service facilities and contacts, including inpatient facilities, doctors, pharmacists, clergy members, funeral directors, etc.

The most important members of the care team, though, are the hospice patient and their family and caregivers, who can contact the hospice team at any time about any problems or concerns. They are invited to attend regular meetings with the hospice team to stay up to date on the plan of care. These meetings help them know what to expect, as well as provide an opportunity for them to offer input on the plan of care.

The spiritual side of hospice care

Hospice care takes an individualized approach to spiritual care since spiritual practices and religious belief are different for everyone. This personalization may include exploring what death means to the hospice patient, supporting the patient and family in expressing goodbyes, or helping to plan a religious ceremony or ritual.

Respite care

When hospice care is provided in the home, the family or primary caregiver may be able to access respite care from the hospice team. Respite care can be provided for up to five days, during which time the hospice patient is looked after in a hospice facility, nursing home, or hospital. This allows the family or primary caregiver a temporary break, or “respite,” from their daily caregiving duties.

Bereavement support

The hospice care team supports the family and caregivers through bereavement and mourning. Support may be provided by a trained volunteer, clergy member or professional counselor through in-person visits, telephone calls, support groups, etc. The hospice team may also refer grieving family members and caregivers to other medical professionals if needed. This support is generally provided for approximately 13 months following a loss. ■