Caring for a Terminally-ill Loved One - Making Compassionate Choices
What is Hospice Care?
The term hospice most often refers to an organization that exclusively serves the needs of the dying. The principal philosophy of hospice is to provide end-of-life care that emphasizes comfort management (i.e. palliative care - management of pain and symptoms is one of its cornerstones) complemented with supportive services for the dying and their families. The philosophy of this type of care focuses on quality of life and making the most of the time remaining in one’s life as opposed to cure-oriented therapies and technological interventions commonly practiced in the hospital environment.
History of Hospice – Dame Cicely Saunders, a London nurse and physician, is universally credited with developing the modern hospice movement in 1967 through the establishment of St. Christopher's Hospice in the town of Sydenham, just outside of London. Through the encouragement and assistance provided by Dr. Saunders, the first hospice program began in the USA in 1971 with Florence Wald, then Dean of the Yale School of Nursing, founding Hospice, Inc. (now Connecticut Hospice, Inc.), a non-profit in New Haven, Connecticut.
Initially Connecticut Hospice was established as strictly a home-care program without the inpatient beds that characterized the St. Christopher's model. Home-care became the model of hospice care that swept the US when, in 1983, the U.S. Congress established the Medicare Hospice Benefit, which resulted in national use of hospice care. The Connecticut Hospice eventually added inpatient beds and became the first independent hospice inpatient facility in the country.
Based on Medicare claims data over the course of 2019 there were 4,840 Medicare certified hospices in operation serving 1.61 million patients. This represents an increase of 18.3% in the number of hospices since 2014. (Source: NHPCO Facts and Figures | 2021 EDITION)
Hospice Care – hospice is a unique blend of services that is designed to address the majority of physical, emotional, and spiritual needs of the terminally ill and their families. As a result, hospice care is provided by an interdisciplinary team of professionals and volunteers, guided by the goals of an individual plan of care. A person is considered “terminally ill” and qualifies for admission to hospice care if they have received a prognosis of 6 months or less to live from their physician. Services are most commonly provided in the patient's own home or in alternative residences such as nursing homes, hospice residential facilities (e.g. Board and Care home), and other congregate living facilities.
Home Care vs. Residential Hospice Care – the choice to have in-home hospice care or to have your loved one cared for in a residential inpatient hospice is a choice that is highly dependent upon your family situation and support that is available. Home hospice is often considered a more comforting alternative to the dying person because of the proximity to beloved family members and familiar surroundings. However, if the primary caregiver needs to work to financially support the household or other family duties make it difficult to dedicate the time necessary to adequately take on all of the responsibilities associated with the care of a dying loved one, then residential hospice is an excellent alternative. Residential hospices provide round-the-clock professional care, significantly reducing the stress that can be associated with you solely caring for your loved one.
Who pays? – most medical insurance policies provide a hospice care benefit. In 1986 Congress made hospice care a permanent benefit for those eligible for coverage under Medicare Part A. At the same time, it also established hospice care as an optional Medicaid benefit. Nearly all hospices are reimbursed by Medicare and/or Medicaid for hospice services they provide to the general public. Your local hospice can provide you with additional information.
A Case in Point:
from The Hospice Choice -- In Pursuit of a Peaceful Death
Walter Adams never considered facing the end of his life, even at 82. Since the recurrence of his colon cancer, he seemed to be in the grip of endless questions. His oncologist told him surgery was not an option this time. For many years, Walter and his wife, Carol had discussed not having excessive treatments or procedures.
After increasing discomfort from his cancer and little relief from medications prescribed by his oncologist, Walter decided it was time to consider hospice. He wasn’t real sure he was ready for that transition. The hospice reminded him "If you have a remission you can still be discharged from hospice. You really have nothing to lose.” They also told him that his Medicare benefit would cover most of his expenses, including medications. This was a concern and helped put his mind at ease, not wanting to financially burden Carol.
Walter and his family quickly found that hospice was able to give them an opportunity to participate in his care while improving his quality of life and time he had left with people he loved.
After Walter had died Carol said “I'm awfully glad that I was able to care for Walter. It wasn’t easy for me; I just couldn't have done it without hospice.”
adapted from
The Hospice Choice
In Pursuit of a Peaceful Death
Resources – there are numerous resources available on the Internet and most likely in your own community that can guide you towards making the right hospice choice. A couple good sources of information are:
National Hospice and Palliative Care Organization (NHPCO) - Hospice Care Facts & Figures
American Association of Retired Persons (AARP) - How To Find A Quality Hospice
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Great overview, Greg!