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Frequently Asked Questions
Hospice is a type of specialized medical care that provides compassionate physical, emotional, spiritual and practical support to people in the advanced stage of illness. During this time, individuals may experience shortness of breath, extreme fatigue, pain, and other distressing, life-limiting symptoms, giving rise to new and different needs, worries and concerns. Yet with hospice’s dedication to symptom relief and support, many critically ill people are better able to focus on what is important to them during this stage of life.
Delivered by an interdisciplinary team of experts, hospice care is designed to relieve pain and other symptoms and to help both patients and families improve their quality of life, typically in the comfort and familiarity of their own homes.
In fact, hospice has been shown to reduce Emergency Department visits and inpatient hospitalizations, improve quality of life and, in some cases, even extend it.
A person can be in hospice for up to six months or even longer, depending upon the individual circumstances. To receive the greatest benefit, a patient should spend at least two to three months in hospice care. Surveys show that both patients and families are more satisfied the longer a patient receives hospice services.
As a result, hospice should be considered whenever someone is in the advanced stages of any of the following progressive illnesses:
- Heart disease, especially Congestive Heart Failure (CHF)
- Dementia, including Alzheimer’s Disease, Lewy Body Dementia, Vascular Dementia
- Neurological conditions such as Parkinson’s, ALS (Lou Gehrig’s disease), stroke
- Kidney failure/End-stage Renal Disease (ESRD)
- Lung disease including Congestive Pulmonary Obstructive Disease (COPD), pulmonary fibrosis
It is important to understand what hospice benefits are offered under your specific type of insurance.
- Any patient with Medicare Part A (hospital insurance) can automatically start hospice care by formally “electing” the benefit. Electing means starting this specific part of Medicare Part A. With Medicare, most services are covered at no additional cost or have a small co-payment if care is provided or arranged by your hospice.
- Those with Medicaid as their primary coverage may also elect the Medicaid Hospice Benefit. Most, but not all, state Medicaid programs cover hospice services.
- If you have other types of insurance, hospice care is usually covered. It is best to check with the individual plan or your employer to understand the details and cost of what is provided.
- If you do not have health insurance, our member providers will be happy to speak with you to give you information on what options you do have. No one is turned away for financial reasons.
Advanced Illness Care (known as palliative care – pronounced PAL-lee-uh-tiv) is specialized medical care for people living with a serious illness. It focuses on relieving the symptoms, pain and stress of illness, with the goal of improving quality of life for both the patient and family.
Anyone, of any age, suffering from a progressive illness can access advanced illness care at any point in their treatment. Progressive illnesses are illnesses that may get worse overtime, and include but are not limited to:
- Heart disease
- Kidney disease
- Liver disease
- Lung disease
- Neurologic disease (ALS/Lou Gehrig’s Disease, Parkinson’s Disease, stroke)
To start services, talk to your health care provider about getting an order for advanced illness care (known as palliative care). Advanced illness care can be provided along with treatments aimed at curing the disease or alone.
Either way, advanced illness care can help improve symptoms and ease concerns such as:
- Shortness of breath
- Loss of appetite
- Emotional distress affecting patients and/or families
- Confusion about what to expect in the weeks and months ahead
- Other needs
Dementia describes a category of diseases that cause memory and language loss, and changes in personality, behavior and judgment. Physical functions such as self-care, continence and mobility also decline.
The most common type of dementia is Alzheimer’s disease, which affects about 5.4 million Americans. With the increasing number of older adults in our society, 16 million Americans could have the disease by 2050.
FOUR MOST COMMON DEMENTIAS
Accounts for 50-70% of all dementias. Typically, there is gradual memory loss followed by a continued decline in other areas of mental and physical functioning. Usually, there is difficulty managing everyday activities, followed by the inability to care for oneself. Verbal communication decreases over time, as does the ability to walk and control the bowel and bladder. The greatest risk factor for Alzheimer’s disease is advanced age.
LEWY BODY DEMENTIA
Shares symptoms of both Alzheimer’s and Parkinson’s disease. There is gradual and fluctuating mental alertness, along with physical symptoms of Parkinson’s (such as a shuffling walk, slowed movement, muscle stiffness). Vivid visual hallucinations, brief periods of unconsciousness, repeated falls, sleep disturbance and sensitivity to some anti-psychotic medications may occur.
Often in combination with Alzheimer’s, vascular dementia is a deterioration of mental function caused by reduced blood flow to the brain (strokes or narrowing of blood vessels). Although vascular dementia is not reversible, treating risk factors like high blood pressure can slow the disease progression. Vascular dementia may appear much like Alzheimer’s, although if strokes continue, sudden changes may be more evident.
Is characterized by two things: changes in behavior and problems with language. Initial symptoms often include uninhibited or inappropriate social behavior, which loved ones and caregivers may find very distressing. The person with frontotemporal dementia may appear apathetic, lose the ability to empathize, and lack insight. Spatial skills and memory remain relatively intact until advanced stages of the disease. Frontotemporal dementia typically occurs between the ages of 35 and 75, and family history is a risk factor.
Work with your doctor who may do head scans and neuropsychological testing. This helps rule out treatable conditions that may cause memory impairment, like depression, medication side effects, thyroid conditions, problems with vision and hearing, excess use of alcohol and nutritional imbalances.
Clinicians specializing in memory disorders are now able to diagnose Alzheimer’s disease with greater than 90% accuracy. Brain autopsy remains the only definitive way to confirm that someone had dementia. Arrangements for brain autopsy should be set up well in advance of the person’s death. For further information, speak with your healthcare provider or social worker.
Treatment of dementia is limited, and currently, there is no cure. However, two classes of medications are approved to treat Alzheimer’s disease. They may slow the course of disease by about six months in 33% of patients.
Progression varies according to the type of dementia. Life expectancy can range from one to 30 years. For Alzheimer’s disease, the average is six to eight years after first symptoms. Because dementia progresses through the brain, physical and mental functions are affected, such as thinking, memory, self-care abilities, continence and mobility.
People with advanced stage dementia usually lose the ability to communicate verbally, walk independently, control bladder and bowel function and participate in self-care. At this stage, hospice care can be beneficial for patient and family, focusing on comfort and quality of life. Infection, usually aspiration pneumonia, is the most common cause of death.
Advance Directives tell family members, friends and doctors what medical care you would want or not want if you cannot communicate because of temporary or permanent illness or injury. Types of directives include Living Wills, Health Care (Medical) Power of Attorney, Mental Health Care Power of Attorney and Prehospital Medical Care Directive (DNR or orange form). Advance Directives take effect only if you are not able to communicate your wishes or lack the capacity to make healthcare decisions.
A living will is a written statement about what treatment you would want if you are seriously ill, in a persistent vegetative state or irreversible coma. It provides guidance about your general philosophy—ranging from “I do not want any life-sustaining treatment beyond comfort care” to “I want my life to be prolonged as long as possible.” You also specify whether you want cardiopulmonary resuscitation, artificially administered food and fluids or to be taken to the hospital. If tube feedings have already been started, a living will doesn’t allow health-care providers to stop them—only the Health Care (Medical) Power of Attorney or legal guardian has the authority to do that.
(Click here for a free living will download.)
A Health Care (Medical) Power of Attorney appoints someone to make medical decisions for you if you can’t make them yourself. That includes a decision about whether to continue artificially administered food and fluids. You can name an alternate Health Care Power of Attorney if the first one cannot serve. You can name more than one person as MPOA, but everyone would have to agree on decisions.
A Mental Health Care Power of Attorney appoints someone to make mental health care decisions for you if you become mentally incapacitated.
Emergency Medical Service personnel (paramedics) are required to resuscitate, stabilize and take people to the hospital. If you do not want CPR or other forms of resuscitation and do not want to be taken to the hospital, you must complete a Pre-Hospital Directive, also known as “Do Not Resuscitate” or orange form because it is printed on orange paper.
Many states give decision-making power to “surrogates,” primarily in order of kinship. Without a living will, the surrogate won’t know your wishes. A surrogate also cannot disconnect a feeding tube. Only a health care (medical) power of attorney or a guardian appointed by a judge can make that decision.
You can write your own advance directives or use any form as long as your signature is properly witnessed. The witness to your signature cannot be related to you by marriage or adoption or benefit from your estate. In some states, the form does not have to be notarized. However, if you travel you may wish to have the forms notarized because this is a requirement in some states. Only the Prehospital Medical Care Directive—the DNR or orange form—must be signed by a licensed health care provider.
Advance Directives are effective as soon as they are signed and witnessed. They do not have an expiration date. If you want to update your advance directives, make out new ones and destroy the old ones. The directive with the most recent date is the legal one.
Distribute copies to your relatives, friends and doctors who may be involved in your health care. Talk to them about your intentions and wishes. Answer their questions. Talking enhances understanding. If you wish, register your Advance Directives with the Secretary of State’s Office (depending on your state). This is not a requirement. But registration makes the documents accessible at all times via computer to people who have a password to view them.