Hospice Care and Advance Directives: Living Your Life, Your Way

Hospice is defined by the National Hospice and Palliative Care Organization (NHPCO) as a model for quality, compassionate care for people facing a life-limiting illness or injury. Hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is offered to the person’s loved ones as well. (NHPCO, 2023)

By Susan Varnum, LICSW, APHSW-C

Hospice Medical Social Worker

Who Is Eligible For Hospice Care?

In the United States, the first hospice program opened in Connecticut in the early 1970s. In 1982, Medicare Part A recipients became eligible for the Medicare Hospice Benefit and more hospices receiving Medicare revenues began to grow. Although the majority of hospice recipients have Medicare as their primary insurance, other health insurances offer a hospice benefit as well. The Hospice Medicare Benefit is provided for patients who have a terminal diagnosis, confirmed by two physicians, who anticipate and affirm that the patient has a prognosis of six months or less to live if the illness follows its expected course.

According to the NHPCO (2023), in 2020 approximately 48.3% of Medicare decedents in New Hampshire received at least one day or more of hospice care and were enrolled in hospice at the time of death. This is slightly higher than the national average of 47.8%.

Hospice services focus on caring, not curing. It involves a multi-disciplinary team comprised of:

• Physicians

• Nurses

• Licensed Nursing Assistants

• Homemakers

• Therapists

• Volunteers

• Social Workers

• Spiritual Care Counselors

• Bereavement Counselors

In most cases, hospice is provided in the person’s home and a family member is the primary care giver. However, hospice can be provided in the setting in which the person is, such as:

• Nursing Homes

• Assisted Living Homes

• Group Homes

• Hospitals

• Inpatient Hospice Units frequently called Hospice Houses

These multi-disciplinary team members make regular visits, based on the individual’s specific plan of care, to provide support to the person and family. Visits may include pain or symptom management, assistance with the psychosocial, emotional and spiritual aspects of dying, teaching on how to care for the patient, providing medication and equipment, as well as grief support and counseling to surviving family and friends.

Each patient is able to create their own individual care plan with their hospice team that is based on their wishes. Some people prefer to die at home, while others wish to be in the care of an inpatient hospice facility where family can visit and not feel the burden of having to provide direct patient care.  Some patients wish to have their pain and symptoms controlled aggressively, while others want a more modest approach. If the patient is unable to speak for his/her/themselves, then their health care proxy will make decisions for them.

Making Wishes Known:  The Importance of End-of-Life Plans

Advance Directives are a document that allows a person to appoint who their health care proxy will be and what type of life-sustaining treatments they do or do not want when they have an advanced life-limiting, incurable and progressive condition. The health care proxy will only make decisions for the person when it is determined by their medical provider the person no longer understands their medical condition or choices for care.

The focus of hospice is to eliminate suffering of the patient and family. Every death that is the result of a terminal illness or injury can be dignified and pain free. Various studies have shown that enrolling in hospice can lengthen a person’s life by days to months. As a hospice social worker for the past nine years, I have witnessed death and the dying process and know the above is true. Patients and families have stated their hospice care was like night and day compared to the care they received in a hospital. It was more personal and more peaceful.

We plan for life events- a wedding, birth, and other milestones. Why should dying be any different? Reach out. Talk early and often to the people and providers in your life about what kind of care you would want when your health becomes no longer curable. It’s important to document your wishes through conversation and writing so your wishes will be carried out.      

For more information, visit the Granite VNA website: Hospice Services at Granite VNA - Home Hospice or at A Local Facility