By: Annette McElhiney
I will never forget in 2008 when my doctor told me, “you have ovarian cancer.” Few words in the English language provoke a stronger reaction of fear and dread than the word cancer. However, there are others like “terminal,” “palliative care,” and “hospice” that are often feared as well. First of all, every life is “terminal.” Life ends for all of us, but no one really knows when.
I was told I had a “terminal” disease with a 25%-35% chance of living 5 years and here I am 10 years later! So much for the definition of “terminal.” But, the terms I really want to discuss in this piece are “palliative care” and “hospice” because I want to dispel the fear some patients have when they are offered this type of care.
Cancer.org answers the question, “What is palliative care?” They write, “Palliative care is care given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer. Palliative care is an approach to care that addresses the person as a whole, not just their disease. The goal is to prevent or treat, as early as possible, the symptoms and side effects of the disease and its treatment, in addition to any related psychological, social, and spiritual problems. Palliative care is also called comfort care, supportive care, and symptom management. Patients may receive palliative care in the hospital, an outpatient clinic, a long-term care facility, or at home under the direction of a physician.”
Palliative care is not a last ditch form of treatment given to dying patients, but rather a humane method of treatment designed to address the specific needs of a patient with a serious disease. Having had surgery and 18-months of chemotherapy for ovarian cancer, which left me constantly fatigued, I would have welcomed having many of my physical and emotional needs met by a team of experts; however, “palliative care” wasn’t often offered 10 years ago. But if I were newly diagnosed with cancer and offered “palliative care” today I’d take it in a “heart beat.” My motto is: “Take all the help you can get as you will probably recover faster as a result.”
The last, and perhaps most panic provoking, term I want to talk about is “Hospice.” Often if someone suggests to a patient that he/she “check out hospice care” the patient panics and thinks he/she is being dismissed. That is so far from the truth! The suggestion simply means a patient should take advantage of another level of treatment that is tailored specifically to the patient and will improve his/her quality of life.
Note how Wikipedia defines hospice, “Hospice care is a type of care and philosophy of care that focuses on the palliation of a chronically ill, terminally ill or seriously ill patient’s pain and symptoms, and attending to their emotional and spiritual needs. In Western society, the concept of hospice has been evolving in Europe since the 11th century. Then, and for centuries thereafter in Roman Catholic tradition, hospices were places of hospitality for the sick, wounded, or dying, as well as those for travelers and pilgrims. The modern concept of hospice includes palliative care for the incurably ill given in such institutions as hospitals or nursing homes, but also care provided to those who would rather spend their last months and days of life in their own homes. The first modern hospice care was created by Cicely Saundersin 1967.”
Again, note that the major thrust is on meeting the physical, nutritional, emotional, and spiritual needs of a seriously ill person. My mother had congestive heart failure and was on hospice for several years. She spent time on hospice in 3 locations: in her home, in a hospital and in a residential nursing home. She seemed to feel supported and cared for during her many episodes.
Some patients panic when they hear the word “hospice” because in order to be eligible for “hospice” and have it paid for by Medicare or insurance companies, several doctors must state that a patient has a serious and “terminal” illness. But remember the definition of “terminal” is relative; with my bleak prognosis, I was deemed “terminally” ill and yet I am still alive and kicking today.
“Hospice” most helps those individuals who because of reactions to chemo or meds need additional help in order to achieve a good quality of life. To illustrate the difference between the fear of hospice and the reality, a McClatcy report says, Thousands of patients who check into hospices expecting to die are winning reprieves instead. Sometimes attention from loved ones and quality care from hospice staff turn things around. Or doctors guess wrong when they predict that death is near. And sometimes long-odds medical miracles happen.”
Whatever the reason, roughly 100,000 U.S. hospice patients will win new leases on life this year. That number, which is based on Centers for Disease Control and Prevention figures, is expected to increase as baby boomers age. It’s a trend that poses exotic challenges—some wrenching, some magnificent—for hospices and for hospice patients and their families.
As a result some patients actually get better. As McClatchty writes, “Given the focused attention of hospice doctors, nurses, social workers and spiritual counselors, the patients get their minimum meds adjusted and take them regularly. They get painkillers adequate to assure a night’s sleep. They eat regularly, and their loved ones get some help and relief.”
My point is when you have a serious illness, particularly ovarian cancer, your situation may be totally different than the same disease in others for a variety of reason. Consequently, as a patient, it is in in your best interest to take advantage of all levels and varieties of care available. The name of the game truly is QUALITY OF LIFE — get it however you can!
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