"Care of the dying is with the knowledge that we are caring for the living" - Hippocrates
In 1978, with the help of a few other visionaries, we started the 13th Home-Care Hospice in the United States, at Columbus, Ohio. I was a highly trained medical oncologist from the department of Developmental Therapeutics at the MD Anderson Hospital and Tumor Institute in Houston, Texas. In my entire lengthy Post Graduate training, pain and symptom management of cancer and terminally ill patients was never taught. Hospice care started in the U.S as a grass-roots movement outside of the medical community because physicians were not managing cancer patients’ pain. During my two-year fellowship in 1973-75, an occasional patient or family would ask about hospice care. I was skeptical of hospice philosophy since the medical community did not endorse it.
The first hospice began in the U.S in 1973, a freestanding facility in New Haven, Connecticut. It was modeled after St. Christopher’s Hospice in London, England. Dr. Sylvia Lack was the medical director, a mentee of Dr. (Dame) Cicely Saunders, founder of St. Christopher’s Hospice. Dr. Saunders is credited with the concept ‘Total Pain’, and founder of the modern day hospice movement. I credit Dr. Elizabeth Kubler-Ross for opening the door to discussing ‘Death and Dying’, in her controversial book released in 1967. I recall during my rotating internship in 1967, a group of attending physicians discussing over breakfast how crazy the psychiatrist (Dr. Kubler-Ross) was and the nerve she had to discuss the topic so openly. Not surprising, for an article in the New England Journal of Medicine eleven years later in 1978 queried 100 physicians, 90% of whom said they would not tell their patient if cancer was the diagnosis. That same study was repeated ten years later in 1988, and now 90% of physicians said that they would tell their patients if cancer was the diagnosis. Why the dramatic change? The change is attributed to Dr. Kubler-Ross and the hospice movement.
Prior to 1983, all the hospices were not-for-profit and relied on philanthropy for financial survival. Then in 1983, under the Social Security Administration, Congress passed the Medicare Hospice Benefit to patients who were terminally ill with a life expectancy of less than 6 months or 180 days. For-profit entrepreneurs saw this as a cash cow, opening the door to for-profit hospices. Of the thousands of hospice programs today, about 70% are for-profit. There was initial abuse with hospices cherry-picking patients with favorable prognoses such as indolent lymphoma, metastatic post-menopausal breast and prostate cancers who clearly were expected to live longer than 180 days. At 179 days, the hospice would discharge the patients, having collected per diem for 179 days. Medicare had been monitoring this practice resulting in a mandate that hospice physicians personally write a certificate of terminal illness (CTI) or narrative to certify that indeed the patient had a limited prognosis and would die within 180 days if the disease progressed on its natural course. Medicare had previously established local coverage determination (LCD) for each terminal illness to help predict prognosis.
Palliative care is the bridge between acute care and hospice care, with hospice care being the last six months of the palliative care continuum. Hospice initially limited care only to adults with a diagnosis of cancer. Predicting prognosis was relatively easy for me being an oncologist. I knew that patients diagnosed with glioblastoma multiforme, pancreatic and small cell lung cancer had no effective treatments available and with a life expectancy of weeks to a few months. It became obvious that hospice care needed to expand. The care is now provided to call patients regardless of age or diagnosis, including life expectancy of less than 180 days. Palliative care has no time limit. Hospice pioneers knew that hospice care was the tip of the iceberg and under the water was a large population of patients with chronic illness with poorly managed pain and symptoms. Hospices were aware that the number of patients was limited to who met the eligible criteria or who accepted the philosophy of hospice. In addition, States who do not have certificate-of-need for hospice programs have hospices competing for patient referrals. I shared with my previous hospice Board in Las Vegas 14 years ago, the need to start palliative care consultations in the hospital setting. At the time, there were 13 hospice programs. Fourteen years later, there are now over 40 programs serving essentially the same population.
Medicare now mandates that patients admitted to the hospital with chronic COPD or CHF diagnoses, if readmitted within 30 days, may negate any reimbursement for charges by the hospital and physician. This has sparked an interest in hospital palliative care programs. The palliatists have learned special skills from hospice care consisting of communication, plan of care, treatment of radiation and chemotherapy side effects, pain and symptom management, discussions of goals of care, psychosocial care and coordination of care. The majority of hospitals with 250 beds or more now have palliative care programs.
The professional schools of medicine, nursing and pharmacy have slowly opened their eyes to the need for teaching students the hospice philosophy and the skills of the palliatists. Numerous individuals have contributed to the success of the hospice and palliative care movement, now recognized as a legitimate sub-specialty board. There are growing numbers of allopathic and osteopathic fellowship programs endorsed by 10 other specialty boards. As a pioneer in the field, I am encouraged with the leadership and direction taken for care of patients with chronic disease and terminal illness. I owe many thanks to doctors Kubler-Ross and Saunders for their vision, which changed my entire medical practice on care of patients with chronic illness.
Hippocrates, the Father of Medicine, was born on the Island of Cos in Greece around 460 B.C. His only tool to manage pain and suffering of the terminally ill patient was his presence at the bedside touching the dying hand. To paraphrase, Hippocrates said that "care of the dying is with the knowledge that we are caring for the living."