The Hospice and Palliative Care Option

Looking back over the past few months we remember the loss of several prominent and notable Americans such as the Queen of Soul, Aretha Franklin, Senator John McCain, and former First Lady, Barbara Bush.  The media described these individuals as having “given up” on curative treatments.  Ms. Franklin opted for hospice care, whereas it was reported that Mrs. Bush received “comfort care.”  However, when patients and families choose these options, they are not giving up – they are taking control by determining how, where, and with whom they want to spend their remaining time.

The term “hospice” (which comes from the same linguistic root as the word “hospitality”) can be traced all the way back to medieval times when it was used to refer to a place of refuge and rest for weary or ill travelers on long journeys. This was also the name given to a unique type of care for the dying that was first introduced by physician Dame Cicely Saunders in 1948.  Saunders, known as the founder of the modern hospice movement, formed the first hospice, St. Christopher’s Hospice, in a London suburb.  Her vision was to provide patient-centered care that addressed the physical, emotional and spiritual needs of those at the end of life.  Now, because of Saunders and her remarkable work, there are thousands of hospice programs in existence throughout the world.

Connecticut Hospice, located in Branford, Connecticut, was America’s first hospice program established in 1974.  However, it was not until several years later in 1982, that the Medicare hospice benefit was initiated by Congress and was then made permanent in 1986.  In 1994, hospice was included as a nationally guaranteed benefit under President Clinton’s health care reform proposal and it is now considered part of the health care continuum.  According to the National Hospice and Palliative Care Organization (NHPCO), about 1.5 million Medicare beneficiaries currently receive care from hospices located throughout the United States each year.

Hospice provides high-quality, specialized health care that enables patients and their families to focus on living their lives as fully as possible despite a life-limiting illness.  Considered to be the model for quality care and compassion, hospice features a multidisciplinary, team-oriented approach to expert medical care, specializing in pain and symptom management, as well as psychosocial and spiritual support.  The patient’s plan of care is individualized and tailored to meet the needs and wishes of the patient.

The hospice team consists of at a minimum, doctors, nurses, home health aides, social workers, chaplains, counselors, and trained volunteers.  These professionals not only care for patients but also family members and caregivers.  Hospice care neither hastens nor postpones death; however, its central belief is that patients should die pain-free and with dignity.  Similarly, palliative care brings this holistic model of care to people even earlier during the course of serious illness.

There is a misguided perception that hospice care is only for cancer patients; however, it is available to those with a wide variety of illnesses such as heart/circulatory diseases, lung disease, dementia, stroke, and more.  Eligibility for hospice care is based on the patient’s prognosis and physician certification of an estimated life expectancy of six months or less.  However, it is possible for a hospice patient to live longer than six months and remain on service if there is evidence of continued decline.   

Signs indicating that someone may be eligible for hospice care include:

• Increased pain, nausea, or respiratory distress
• Increased weakness, or fatigue
• Repeated hospitalizations, or frequent trips to the emergency room
• Failure to “bounce back” after medical set-backs
• Progressive weight loss, decreasing appetite or dysphagia
• Increased assistance required when walking, eating, bathing, dressing or going to the bathroom
• Decreased alertness, decline in cognitive status, emotional withdrawal, or increased sleeping

Hospice care is designed to be available 24 hours a day, seven days a week.  It is provided in various settings such as the patient’s home or residential facility, a hospital, a nursing home, or a private hospice facility.  It is paid for by Medicare, Medicaid in most states (i.e., South Carolina), the Department of Veterans Affairs, most private insurance plans, HMOs, and other managed care organizations.  Not only is coverage provided for care rendered by the hospice team, but the patient’s medications, medical equipment, and supplies related to their life-limiting illness are all covered as well.

In addition to providing high quality, holistic medical care, the hospice team follows the patient’s family for thirteen months after their death.  Bereavement care is provided recognizing that birthdays, anniversaries, and holidays are often most difficult the first year after the loss death of a loved one.  The hospice team helps families get through tough times through telephone calls, visits, written materials about grieving, support groups and individual counseling sessions.

Hospice and palliative care are both wonderful options for those with life-limiting illnesses.  These options allow patients to take control and to live out the remainder of their days according to their wishes while being treated with utmost dignity and respect and to remain pain-free.  For more information about hospice and palliative care, please visit NHPCO’s CaringInfo.org.