Hospice, as practiced in the United States, is more than a philosophy designed to support physical, psychosocial and spiritual needs of terminally ill patients and their families and significant others, it is a business.
According to Medicare,“Hospice is a special way of caring for people who are terminally ill, and for their family. This care includes physical care and counseling. Hospice care is given by a public agency or private company approved by Medicare. It is for all age groups, including children, adults, and the elderly during their final stages of life. The goal of hospice is to care for you and your family, not to cure your illness.” Among services provided by Medicare, hospice includes medical and support services, such as nursing care, medical social services, doctor services, counseling, homemaker services, and various other types of services. A team approach is utilized and includes doctors, nurses, home health aides, social workers, counselors and trained volunteers, with most care provided in the patient’s home. Patients may also have hospice care in a hospice facility, hospital, nursing home, assisted living facility or adult care home.
Although the concept has been around for thousands of years, the modern hospice movement has often been attributed to a British nurse turned physician (and also held a degree in social work), Dame Cicely Saunders, who established the St. Christopher’s Hospice in London in 1967. Dame Cicely assembled a team consisting of physicians, nurses, chaplains, counselors and physical therapists to deliver care to the dying.
Hospice began in the United States in New Haven Connecticut. The Hospice of New Haven was founded by Florence Wald, former Dean of Yale University’s School of Nursing and began seeing home patients in 1974 and opened an inpatient facility in 1979.
In 1982, the Hospice Medicare benefit was enacted as part of the Tax Equity and Fiscal Responsibility Act, and Medicare has provided funding that has fueled the hospice movement ever since. The Medicare entitlement became permanent in 1986. Also in 1986, the Consolidated Omnibus Budget Reconciliation Act allowed Medicaid to pay for hospice care. At that time, there were 1,505 hospices in the United States.
Over the years, Medicare guidelines have been established and criteria developed as part of the constant evolution shaping the growth and development of hospice care. These guidelines have also provided the framework for most private insurance companies who offer hospice as a benefit. The underlying principal of hospice care is that no curative treatment be provided for the diagnosis that led to hospice qualification. Therefore, patients do not receive chemotherapy, rehabilitative or restorative treatment or surgical intervention. Such treatment may be available, however, if the goal of the treatment is to alleviate symptoms and not cure the disease. For example, if the patient is admitted for cancer and pain is caused by pressure from a growing tumor, chemotherapy or radiation may be used to shrink the tumor if the goal is to alleviate the pain and not to cure the cancer.
Hospice focuses on palliative care, or treatment of symptoms; anything that will provide comfort. The most common symptoms treated are pain, difficulty breathing, nausea and vomiting and fatigue. Palliative care is also offered in settings outside of hospice and in conjunction with curative treatments.
In order to qualify for hospice care, certain criteria must be met. Among those criteria is a physician certification that the patient’s life expectancy is six months or less. Of course, the physician does not know how long a person will live. The decision will be based on a number of objective criteria that suggest a limited life expectancy of six months or less. It is possible the patient will improve or will continue to decline and not die within six months. If improving, the patient can be discharged from hospice. There is no penalty for going on and off hospice many times over a period of years; it is also possible the patient will continue on hospice for longer than six months.
Since hospice treatment is related to a specific “hospice diagnosis,” a patient can be on hospice for one diagnosis, while the patient continues to receive life-prolonging treatment for another disease. For example, a patient may meet hospice criteria for a diagnosis of end stage dementia. So the patient is admitted, hospice bills for their service, and the patient does not receive aggressive dementia treatment. However, the patient may also have a cardiac diagnosis for which aggressive, life-prolonging treatment is provided by another provider. Or, the patient may also have end stage renal disease and be on dialysis. All while remaining of hospice for dementia. It seems contradictory, but occasionally happens and seems to fit within guidelines..
Currently hospices treat over a million patients a year and take in $17 billion dollars a year. Most of that money comes from Medicare. As with most government programs, hospice began with the best intentions and has provided tremendous benefit to a great many individuals and families. But as with anything, some people have found ways to abuse the system. Those abuses lead to greater regulation, which will invariably hurt innocent people. The majority of hospice providers and hospice workers are doing excellent work.
There are several things to look for when choosing a hospice. Some people suggest choosing a hospice that is non-profit. Some recent studies have indicated a higher rate of abuse among for-profit hospices. There are, of course, some excellent for-profit hospices and some substandard non-profits.
One important consideration is to ask about the availability of an inpatient unit. Does the hospice have their own facility? Do they contract with another facility or facilities? How often do they use either General Inpatient Care or Continuous Nursing Care? You can also speak to people who operate support groups or to your local Area Agency on Aging to try to get recommendations from them regarding hospice. Most often, a doctor’s office, or hospital discharge planner, or social worker makes a referral. It is a good idea to speak with more than one hospice before deciding.
Remember, too, that patients can change hospices once in each benefit period. The hospices will work out any billing issues. While on hospice, if you have concerns with the care or services, you are free to contact another hospice and tell them you are interested in transferring care. You will then have an opportunity to meet with a representative of that hospice and decide if that option is better. With hospice, the patient and the family should be involved in making decisions and guiding the care. In fact, the patient and family members should be considered part of the hospice’s interdisciplinary team.
Hospice is a wonderful benefit. Like anything else, it is not appropriate for everyone and is not always the best choice. There are many varieties of hospice and while one hospice may be perfect for one patient, another hospice may be more appropriate for someone else. It is important to be a wise consumer. It is also important to educate yourself in advance – thinking about hospice is part of planning and it is best done well before the need arises.