I recently read a Speakout column regarding a person's concerns regarding hospice care and I want to inform the public of correct information regarding this very important issue.
I have been a registered nurse for 25 years and been involved in hospice for 12 years. I have been the director/coordinator of VNA Hospice for nine years. I have been blessed to help provide care to the terminally ill in a manner that I can only describe as a mission. Hospice care is specialized and requires giving one's self to provide comfort and compassion at this very important time in someone's life. I feel your caller has been either misinformed or does not understand hospice care. Frequently someone caring for a patient is not aware of all of the complexities of terminal care. I feel this caller has this patient's best interest at heart but does not understand the care hospice provides.
The founder of the first hospice, Dame Cicely Saunders, has been quoted as saying, "You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until you die." The most common fears of dying are being a burden, pain, lack of control and losing one's dignity. A recent Gallup and Harris Poll stated that 90 percent of people prefer to be cared for and die at home. 89 percent believe it is the family's responsibility to care for the dying. 96 percent of Americans want to be told if they have cancer and 85 percent want a "realistic estimate" of their life expectancy. Hospice provides a special kind of care designed to provide comfort and support when a life-limiting illness no longer responds to cure-
Hospice provides a team of doctors, nurses, social workers, home health aides, clergy, volunteers, homemakers and therapists to provide assistance according to their areas of expertise for the patient and the family in the privacy of the home. Medications, supplies and medical equipment are provided as appropriate to meet your needs. Hospice uses the most effective medications along with other comfort measures to aggressively control pain and provide symptom relief. Team members work with the patient/caregiver to control physical, emotional and spiritual pain. It is never easy and sometimes very difficult to care for a loved one at home.
Hospice NEVER does anything to cause death sooner! Hospice lends support and specialized knowledge to promote comfort. Nothing is done to speed up or slow down the dying process. Hospice never refuses food or water for a dying patient. Hospice care recognizes that as the body's condition deteriorates, the patient may appear to be dehydrating due to poor fluid intake. This is part of the natural dying process. Studies show that the patient will be more comfortable when he/she appears to be dehydrated. The normal bodily function are shutting down including the kidneys, therefore the body is unable to excrete fluids normally and this fluid builds up in the lungs and other tissue of the body. When a terminally ill patient is dehydrated, there is a decrease in gastric (stomach) secretions resulting in less nausea and vomiting. There is a decreasing pulmonary (lung) secretions making breathing easier without the need for an increase in pain medicine as dehydration tends to have an analgesic effect. Each person is different so each should be considered individually. God made our bodies to know when to decrease our food and fluid intake to allow the most peaceful death.
Normal dehydration due to everyday illness does not compare to the dehydration effects in a terminally ill patient. Out hospice patients/caregivers are told to offer food or drink and if they want a drink or something to eat to give it to them but not "force" them. Your caller stated they are not allowed to give a hospice patient food or water even if they are asking for it. This is NOT what hospice is about!
Due to medical technology, we in the United States are under the impression that every illness or injury can be cured and that if we get the "right" medical care we will not die. I assure you that we all will die. I just this week witnessed a family grieving over the tragic loss of a 25-year-old wife and daughter. The death of this young, beautiful, active, caring young woman has again reminded me that life is very fragile and that no matter what medical knowledge we have available to us, that we cannot always sustain life. In the case of the terminally ill, would it not be wonderful to concentrate on the love and support of family and friends, the resolution of old conflicts, and dealing with end of life, etc. rather than on all the technology that will only serve to make death more painful. I am aware of the Terri Schiavo case and have followed this case closely. I feel hospice unfortunately, received a bad name because of this case. This case was not about the care Terri received from hospice but a family that could not come to a resolution on the care Terri was to receive. I have attached an editorial by Bill Colby. Mr. Colby was the lawyer for the family of Nancy Cruzan. In his editorial he states: "The purpose of medical technology is to serve as a bridge to recovery so that I can live life.
When it cannot, I want it stopped." The most important way to avoid this type of conflict in a family is to have an advanced directive, preferably with written directives and someone appointed as health-care proxy to carry out these directives in the instance that the patient cannot make his/her own decisions. There is an abundance of information about advance directives and I would ask that if anyone would like to have more information about this please contact me.
Quality of life is individual to each and every one of us. Hospice is about providing quality of life until that patient physically dies. Please do not avoid hospice care because you feel you or your loved one will be giving up. Hospice provides the hope of life without pain and suffering until you die. We all want every day we have to be the best it can be. Hospice helps to make every day the best it can be for the terminally ill.
VNA Hospice is a private, non-profit home health care provider, certified by Medicare and Medicaid and licensed by that state of Missouri. Services are paid for by Medicare, Medicaid, various forms of private health insurance and occasionally the generous contributions of others.
Please contact me for more information at VNA of SEMO Hospice. 1218 Linn Street, Sikeston, Mo. 63801. Phone 573-471-0520 or 1-800-481-0520.
Diane Chappell, RN Director
VNA of SEMO Hospice