Hospice Patients Alliance: Consumer Advocacy


One of the main reasons for using a hospice's service is represented by the term, "symptom management." With most terminal illnesses, symptoms arise which can be quite uncomfortable and which cause a lot of fear and confusion for both patients and families alike. Fortunately, hospice staff are thoroughly trained in how to achieve patient comfort. Using standing orders or medications ordered by the physician directly, hospice staff normally will do everything possible to keep your loved one comfortable.

Medical science has learned much over the years and even very severe pain can be controlled in most cases. If oral medications are not effective, the medication may be changed to another or the dosage increased or the route of giving the medication changed. Sometimes a patient may not be absorbing medications which are taken orally. The physician may order medications given "subcutaneously" or "intramuscularly" or even by "IV" (intravenously). The same dosage of medication given by IV may be twice as effective as if given by mouth!

In addition, there are small, portable pumps for IV infusions called "PCA's" or "Patient Controlled Anaesthesia." These little devices can control the rate of giving the medication and also allow for 'boluses' or little extra dosages of the medication, all controlled by the patient, family or nursing staff on hand. Using PCA's, many hospices can achieve pain control at home without a hospital placement being necessary to achieve pain control. In fact, almost all symptom control procedures which can be done in a hospital can also be done at home with no need for bothering the patient by moving him or her to a hospital.

Symptoms can be of many sorts, even though we've mentioned pain above as a common example. Some patients may have severe vomiting, hiccoughs, seizure activity, agitation or other disturbances. These symptoms may be common with a particular disease and are often anticipated by the hospice staff and the physician. Your RN case manager will keep you informed of what symptoms are beginning to make themselves known, and what measures can be taken to control them.

Good hospice care at the Routine Home Care Level of Services can often avoid "emergencies" and "crisis" situations. The RN case manager will instruct you on how to administer these medications. Often, when a medication is begun for a symptom related to a terminal illness, that medication will need to be continued throughout the course of hospice care, but that is something which will be explained to you for each particular medication.

In those situations where an Attending Physician may be unwilling or unable to help your loved one be comfortable, you have the right to contact the hospice's Medical Director for his or her intervention on your loved one's behalf. The Medical Director must assure that the hospice provide care needed to maintain or achieve patient comfort.

If you have questions about hospice, we hope that you will take the time to visit the hundreds of pages at our website, read our Guide to Hospice Care, visit our resources and links section (with hundreds of vital resources listed) .

Hospice Patients Alliance affirms that all human life is inherently valuable and that the role of hospice nurses, physicians and all other staff is to alleviate suffering and provide comfort for the sick and dying without sanctioning or assisting their suicide. A death with dignity allows for a natural death in its own time, while doing everything possible to assure relief from distressing symptoms. Hospice Patients Alliance works hard to promote quality hospice care throughout the USA. If you would like to support our mission, we hope you wille consider supporting our mission through a donation. Hospice Patients Alliance is a 501(c)(3) charitable nonprofit corporation and your donations are deductible to the full extent allowed by law.

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