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Advance Directive: A general term that describes two legal documents - a living will and medical power of attorney. These documents allow you to give instructions about future medical care and appoint a person to make healthcare decisions if you are unable to make them yourself. Each state regulates the use of advance directives differently.

Benefits and Burdens: A commonly used guideline for deciding whether to begin or stop medical treatments. A benefit can refer to the successful outcome of a medical procedure or treatment.  Outcomes can be medical (for example,  the heart beats again); or functional (for example, the person is able to walk to the bathroom after being incapacitated by a stroke).  Or outcomes support the patient's values (for example, the patient is able to die at home as he or she wished).  However, a benefit from one point of view can be experienced as a burden from another and might be viewed differently by doctors, patients and families. For example, if a patient's heart stops, is resuscitated and starts beating again, this is a successful outcome from a medical point of view, and a doctor may consider it a benefit. To the patient who is dying from an advanced illness, resuscitation may cause further injury and contribute to the overall experience of suffering. This success, from the doctor's point of view, might actually be experienced as an additional burden by the patient. Discussions of the benefits and burdens of medical treatments should occur within the framework of the patient's overall goals for care.

Capacity: In the healthcare context, the ability of the patient to understand and appreciate the nature and consequences of healthcare decisions and to make an informed decision. The term "competent" is also used to indicate ability to make informed decisions.

Cardiopulmonary Resuscitation (CPR): A group of treatments, any or all of which are given to support or restore breathing and circulation if the heart or lungs stop working.

Do-Not-Resuscitate (DNR) Order: A DNR order is a physician's written order instructing healthcare providers not to attempt cardiopulmonary resuscitation (CPR) if the patient stops breathing or the heart stops beating. A person with a valid DNR order will not be given CPR under these circumstances. Although the DNR order is written at the request of the patient or the person speaking on behalf of the patient, it must be signed by a physician to be valid.

General Inpatient Care: A specific benefit listed under Medicare and private insurance, usually provided in a hospice facility such as Collier Hospice Center, on a medical floor or unit of the hospital. For situations when: acute symptom management is needed for a patient who's dying and can't manage at home; a family breakdown occurs and caregivers cannot provide care; management of a particularly bothersome symptom is required for a limited period of time.

Hospice Care: A program to deliver palliative care to individuals with advanced illness. In addition to providing palliative care and personal support to the patient, hospice includes support for the patient's family while the patient is dying, and grief support.

Incompetent: See "Capacity."

Inpatient or Routine Care: This is used as an alternative to hospital or home care. Patients may stay in Collier Hospice Center when other resources are unavailable or inappropriate.

Life-Sustaining Treatment: Treatments (medical procedures) that replace or support an essential bodily function (may also be called life-support treatments). Life-sustaining treatments include cardiopulmonary resuscitation, mechanical ventilation, artificial nutrition and hydration, dialysis, and certain other treatments.

Living Will: An advance directive in which people document their wishes about future medical treatment if they are at the end of life and unable to communicate. It also is called a "directive to physicians," "healthcare declaration," or "medical directive." The purpose of a living will is to guide family members and doctors in deciding how aggressively to use medical treatments.

Medical Power of Attorney: A document that allows individuals to appoint someone else to make decisions about their medical care if they are unable to communicate. It may also be called a "health care proxy," "durable power of attorney for health care," or "appointment of a health care agent or surrogate." The person appointed may be called a health care agent, surrogate, attorney-in-fact, or proxy.

Palliative Care: A comprehensive approach to treating serious illness that focuses on the physical, psychological, spiritual, and social needs of the patient. Its goal is to achieve the best quality of life by relieving suffering, controlling pain and symptoms, and enabling maximum functional capacity. Respect for the patient's culture, beliefs and values is an essential component. Palliative care is sometimes called "comfort care" or "hospice-type care."

Withholding or Withdrawing Treatment: Not beginning life-sustaining measures or stopping them after they have been used for a certain period of time.

Hospice Myths

"I cannot say enough about the excellent care my mother received in hospice at Lutheran. The staff was very caring and professional in every way. Under very stressful and emotional times, your staff did everything they could to help my family. My sincere thanks!"

Hospice care is not immune to myths and untruths. Here are a few. For more information on hospice, call us at 303-425-8000.

Myth: Hospice is a place.
Hospice care takes place wherever the need exists-usually in the patient's home, where about 80 percent of hospice care is provided. Services are also offered in nursing homes, assisted living facilities or hospice facilities like Collier Hospice Center.

Myth: The patient pays for hospice.
Medicare covers hospice for those who qualify. Most people who use hospice are over 65 and are entitled to the Medicare Hospice Benefit. This benefit covers virtually all hospice services and requires few, if any, out-of-pocket expenses. For those on private pay insurance, hospice is often a benefit. The referral nurse helps determine if it's a benefit and with which hospice the insurance company has a contract.

Myth: I have to go into the Hospice program my doctor recommends.
The only restriction you may have for choosing which Hospice program to enter may be your insurance company. Otherwise, the choice is always up to you and your family.

Myth: Going into a hospice program hastens death.
Hospice neither hastens nor prolongs death. It allows the death process to proceed at a normal and natural pace. Hospice provides specialized knowledge in the dying process. It also gives personalized services and a caring community so that patients and families can prepare for a death.

Myth: Hospice is only for people with cancer.
More than one-fifth of hospice patients nationwide have diagnoses other than cancer. Increasingly, hospices are also serving families coping with the end stages of chronic diseases, such as emphysema, Alzheimer's, cardiovascular, neuromuscular diseases, and HIV/AIDS.

Myth: Hospice is only for old people.
Although the majority of hospice patients are older, hospices serve patients of all ages. Some hospices offer expertise in hospice care for children.

Myth: Hospice is only for dying people.
Hospice helps people at many levels of their life-limiting illness, including pain and symptom management, and emotional and educational support. As a family-centered concept of care, hospice focuses as much on the grieving family as on the dying patients. Most hospices make their grief services available to the community-at-large, serving schools, churches and the workplace.

Myth: Hospice can help only when family members are available to provide care.
Recognizing that terminally ill people may live alone or with family members unable to provide care, many hospices coordinate community resources to make home care possible; or, they help to find an alternative location where the patient can safely receive care.

Myth: Hospice is for people who don't need a high level of care.
Hospice care is serious medicine. Most hospices are Medicare-certified, requiring that they employ experienced medical and nursing personnel with skills in symptom control. Hospices offer state-of-the-art palliative care, using advanced technologies to prevent or alleviate distressing symptoms.

Myth: Hospice is only for people who can accept death.
While those affected by terminal illness struggle to come to terms with death, hospices generally help them find their way at their own speed. Many hospices welcome inquiries from families who are unsure about their needs and preferences. Hospice staff are readily available to discuss all options and to facilitate family decisions.

Myth: Hospice is not covered by managed care.
Although managed care organizations (MCOs) are not required to include hospice coverage, Medicare beneficiaries can use their Medicare Hospice Benefit anytime, anywhere they choose. They are not locked into end-of-life services offered or not offered by the MCOs. On the other hand, those under 65 are confined to their MCO's services, but are likely to gain access to hospice care upon inquiry.

Myth: Hospice is for when there is no hope.
When death is in sight, there are two options: submit without hope or live life as fully as ever until the end. The gift of hospice is its capacity to help families discover how much can be shared at the end of life through personal and spiritual connections that often are not made without assistance. It is no wonder that many family members can look back upon their hospice experience with the knowledge that everything possible was done toward a peaceful death.

Myth: Hospice patients become addicted to drugs.
In hospice, a major focus is pain control and comfort. Drugs are just one part of symptom control and are used in the lowest dose possible to get the patient comfortable.

Myth: Once you sign on to a hospice program, there's no getting out of it.
If a person chooses hospice care and their condition improves, they may sign out of hospice and go back to aggressive, curative treatment or live their life as they see fit. When the need for hospice arises in the future, the person may sign back in to hospice.

Myth: Hospice patients must have a Do Not Resuscitate (DNR) order.
While most hospice patients have a DNR order, it is not required for hospice care.

Myth: Hospices save money by not working to cure the patient.
In hospice, the patient has already decided to forego aggressive treatment and to focus on remaining comfortable and living their remaining days to the fullest. The patient's pain is managed so they are comfortable and able to be with their loved ones.

Myth: Hospice is only for people who are just days away from death.
Generally, the prognosis for entry into hospice is a life expectancy of six months if the disease runs its "normal" course. However, people may enter hospice at various stages in their disease process.

(extracted from "Debunking the Myths of Hospice" by Naomi Naierman, www.partnershipforcaring.org)