Advance Directives


What are advance directives?

“Advance directives” are legal documents that allow you to plan and make your own end-of-life wishes known in the event that you are unable to communicate. Advance directives consist of (1) a living will and (2) a medical (healthcare) power of attorney. A living will describes your wishes regarding medical care. With a medical power of attorney you can appoint a person to make healthcare decisions for you in case you are unable to speak for yourself.


What is a living will?

A living will is an advance directive that guides your family and healthcare team through the medical treatment you wish to receive if you are unable to communicate your wishes. According to your state’s living will law, this document is considered legal as soon as you sign it and a witness signs it, if that is required. A living will goes into effect when you are no longer able to make your own decisions.


What is a medical power of attorney?

A medical power of attorney is the advance directive that allows you to select a person you trust to make decisions about your medical care if you are temporarily or permanently unable to communicate and make decisions for yourself. This includes not only decisions at the end of your life, but also in other medical situations. This document is also known as a “healthcare proxy,” “appointment of healthcare agent” or “durable power of attorney for healthcare.” This document goes into effect when your physician declares that you are unable to make your own medical decisions. The person you select can also be known as a healthcare agent, surrogate, attorney-in-fact or healthcare proxy.


Who should I select to be my medical power of attorney?

You should select someone you trust, such as a close family member or good friend who understands your wishes and feels comfortable making healthcare decisions for you. You should have ongoing conversations with this person to talk about your wishes at the end of life. Make sure your medical power of attorney feels comfortable and confident about the type of medical care you want to receive.

Most state laws prevent your doctor or any other professional caregiver from being assigned as your healthcare agent. You can also select a second agent as an alternative in case your first healthcare agent is unwilling or unable to serve.





What do I need to know about end-of-life decisions to prepare my advance directives?

Life-sustaining treatments are specific medical procedures that support the body and keep a person alive when the body is not able to function on its own. Making the decision about whether or not to have life-sustaining treatments can be difficult depending on your situation.

You might want to accept life-sustaining treatments if they will help to restore normal functions and improve your condition. However, if you are faced with a serious life-limiting condition, you may not want to prolong you life with life-sustaining treatment. The most common end-of-life medical decisions that you, family members or an appointed healthcare agent must make involve:

·         Cardiopulmonary Resuscitation (CPR)

·         Do Not Resuscitate Order (DNR)

·         Do Not Intubate Order (DNI)

·         Artificial Nutrition and Hydration

What is cardiopulmonary resuscitation (CPR)?

Cardiopulmonary resuscitation (CPR) is a group of procedures used when your heart stops (cardiac arrest) or breathing stops (respiratory arrest). For cardiac arrest the treatment may include chest compressions, electrical stimulation or use of medication to support or restore the heart’s ability to function. For respiratory arrest treatment may include insertion of a tube through your mouth or nose into the trachea (wind pipe that connects the throat to the lungs) to artificially support or restore your breathing function. The tube placed in your body is connected to a mechanical ventilator.

What is a Do Not Resuscitate (DNR) order?

A Do Not Resuscitate (DNR) order is a written physician’s order that prevents the healthcare team from initiating CPR. The physician writes and signs a DNR at your request or at the request of your family or appointed healthcare agent if you do not want to receive CPR in the event of cardiac or respiratory arrest. The DNR order must be signed by a doctor, otherwise it cannot be honored. DNR orders:

·         Can be cancelled at any time by letting the doctor who signed the DNR know that you have changed your decision.

·         Remain in effect if you transfer from one healthcare facility to another. However, consult the arrival facility’s policy to make sure. Also, the DNR may not be honored if you are discharged from the facility to your home if your state does not have an out-of-hospital DNR policy.

·         May not be honored during surgery but this is something very important to discuss with your surgeon and anesthesiologist before surgery so your wishes are honored.

·         Should be posted in the home if that is where you are being cared for.

If there is no DNR order, the healthcare team will respond to the emergency and perform CPR. The team will not have time to consult a living will, the family, the patient’s healthcare agent or the patient’s doctors if they are not present.

What is a Do Not Intubate (DNI) order?

When you request a DNR order, your physician may ask if you also wish to have a “do-not-intubate” order. Intubation is the placement of a tube into the nose or mouth in order to have it enter your windpipe (trachea) to help you breathe when you cannot breathe adequately yourself. Intubation might prevent a heart attack or respiratory arrest.

Refusal of intubation does not mean refusal of other techniques of resuscitation. If you do not want mechanical ventilation (breathing), you must discuss intubation because it may be included as part of a DNR order. Even if you have completed a DNR order that does not mean that you have refused to intubated. If you do not want life mechanically sustained, you must discuss your decision about intubation with your doctor.

What is artificial nutrition and hydration?

Artificial nutrition and hydration are treatments that allow a person to receive nutrition (food) and hydration (fluid) when they are no longer able to take them by mouth. This treatment can be given to a person who cannot eat or drink enough to sustain life. When someone with a serious or life-limiting illness is no longer able to eat or drink, it usually means that the body is beginning to stop functioning as a result of illness.

How can I prepare my advance directive?

You can fill out a living will and medical power of attorney form without a lawyer. The National Hospice and Palliative Care Organization, your state hospice organization, local hospitals, public health departments, state bar associations or state aging offices provide state-specific forms and instructions. It is very important that you use advance directive forms specifically created for your state so that they are legal. Read the forms carefully and make sure you follow legal requirements determined by your state. You may need to have a witness signature and get the forms notarized (signed by a notary public).

Keep your completed advance directive in an easily accessible place and give photocopies to your primary medical power of attorney and your secondary, alternate agent. This document stays in effect unless you cancel it or decide to complete a new one with changes.

Can healthcare professional refuse to honor my advance directive?

Some healthcare professionals may choose to ignore what is written in your living will if they believe that what is written is against your best interest or for moral or religious reasons. In some cases there may be a misunderstanding of the law, medical ethics or professional responsibilities. It is important for you to know if your doctor will honor your request. Bring your completed living will to your next healthcare appointment and ask your doctor if he or she has questions or concerns.

Who would decide about my medical care if I did not complete an advance directive?

If you are unable to make decisions, healthcare professionals must consult your family members. Some states have decision-making laws to identify individuals who may make decisions on your behalf when you do not have an advance directive, such as your spouse, parents or adult children.

Does my advance directive include my wishes about organ donation, cremation or burial?

Some states may include your wishes about whether you want to be an organ donor as part of the advance directive. If it is not included, you can still write down your decision about organ donation. However, you should fill out a specific form for that purpose.

You should also let your loved ones know if you wish to be buried or cremated.


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Assessing Level of Consciousness/Mental Status

Assessing Level of Consciousness/Mental Status


·        Alert – the patient is awake and has your attention.

·        Lethargic – the patient keeps falling back to sleep. It is different from patient sleeping peacefully.

·        Confused – patient unable to think clearly, disoriented.

·        Forgetful – the patient has difficulty remembering things. To test a patient’s memory, ask “What did you eat for dinner last night?” or “What did you have for breakfast?”

·        Nonverbal – patient is unable to speak.

·        Unresponsive – patient does not respond. There are different stimuli that the patient will respond to:

1.     Verbal Stimulus – when you talk to the patient, do they react to you? Normal voice or loud voice?

2.     Pain Stimulus – gently but firmly pinch the patient, if they withdraw, they respond to pain stimulus.

·        Visual Disturbance – patient has blurry vision, narrowing vision, seeing halos, flashing lights, black spots.

·        Altered Mentation – confusion, disorientation, stupor (or mental numbness), delirium, psychosis, hallucinations, amnesia, and dementia.

·        Depressed – patient is unhappy.

·        Anxious – patient is worrying about something, nervous, very uneasy.

·        Disturbed Sleep Pattern – patient unable to sleep, sleeping for too long, or has a messed up sleep/wake schedule.

Orientation – you must ask questions that are open ended, meaning you can’t answer with a simple yes or no.

·        Person – ask the patient to identify different people in the room. Do not ask the patient, “Do you know your name?” You can ask “What is your name?”

·        Place – ask the patient “Where are you right now?” Do not ask the patient, “Do you know where you are right now?” There is a big difference.

·        Time – ask the patient “What is the year?”; “Who is the current president?”

If the patient gets the questions wrong, make sure to reorient the person afterwards.

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Bag Technique




To describe the procedure for maintaining a clean nursing bag and preventing cross-contamination.


As part of the infection/exposure control plan, GENTLE CARE HOSPICE, INC. personnel will consistently implement principles to maximize efficient use of the patient’s care supply bag when used in caring for patients.


 1.             The bag may have the following contents:              

                A.            Hand washing equipment – alcohol based hand rub and skin cleanser, soap, and paper towels.

B.            Assessment equipment (as appropriate to the level of care being provided) – thermometers, stethoscopes, a hem gauge to measure wounds, sphygmomanometer, and urine testing equipment.


C.            Disposable supplies (as appropriate to the level of care being provided) – plastic thermometer covers (if applicable), sterile and non-sterile gloves, plastic aprons, dressings, adhesive tape, alcohol swabs, tongue blades, applicators, lubricant jelly, scissors, bandages, syringes and needles, vacutainer equipment for venipuncture, skin cleanser, paper towels, and a CPR mask


D.            Paper supplies (if applicable) – printed forms and materials necessary to teach patients and family/caregivers and document patient care


2.             Personnel must regularly check the expiration date of any disposable supplies kept in the nursing bag.  Expired supplies should be returned for disposal.


3.             The bag will be cleaned as soon as feasible when it is grossly contaminated or dirty.  Soap and water, alcohol, or another approved cleaning agent will be used.

Bag Technique


1.             The bag will be placed on a clean surface (i.e., a surface that can be easily disinfected) in the car and in the home.


2.             Prior to administering care, alcohol-based hand rub or soap and paper towels will be removed, and hands will be washed.  These supplies will be left at the sink for hand washing at the end of the visit.  Hand washing will always be completed before opening the bag.


3.             After hand washing, the supplies and/or equipment needed for the visit will be removed from the bag.


4.             The bag will contain a designated clean and dirty area.  The clean area contains unused or cleaned supplies/equipment, and the dirty area is designated for contaminated materials (i.e., used equipment, etc.).


5.             When the visit is completed, reusable equipment will be cleaned using alcohol, soap and water, or other appropriate solution, hands will be washed, and equipment and supplies will be returned to the bag.


6.             Hands will be decontaminated prior to returning clean equipment to bag.


7.             If paper towels/newspapers have been used as protective barrier for bag placement in the patient’s home, they will be discarded.

Bereavement Follow Up



All surviving loved ones have access to grief support and counseling service directly and/or by referral.


1.       Signature others will be identified in the patient record.

2.       Issues of anticipatory grief will be identified on an ongoing basis and bereavement coordinator will be appraised of potential difficulties for survivors.

3.       The bereavement coordinator may meet with loved ones before the patient death upon request of the hospice staff.

4.       A bereavement assessment and care plan will be completed for each family unit. Risk factors are identified.

5.       Standard bereavement service are as follows for all clients:


       Letter sent

       Bereavement visit schedules


       Phone call to loved one



       Pamphlet of grief

       Invitation to bereavement group



       Phone call

       Invitation to bereavement group



       Phone call

6.       Ongoing one-on-one bereavement counseling will be offered to all loved ones for one year following death. This will be available at a minimum of five (5) days per week.

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Bloodborne Pathogens


Bloodborne Pathogens and the Law
U.S. Department of Labor’s Occupational Safety and Health Administration (OSHA) has issued regulations for the employers to protect employees from occupational exposure to blood borne pathogens.
Who needs OSHA Bloodborne Pathogens Training?
Any employee who is required to handle human blood or other potentially infectious materials (OPIMs) or any employee who has the potential for occupational exposure to blood or OPIMs needs OSHA blood borne pathogens training. Talk with your supervisor for more information on specific procedures performed or devices approved for use in your department.
If you reach a point in this training where you have a question, STOP.  Contact your local infection control or employee health department. DO NOT continue until your question has been answered.

What are Bloodborne Pathogens?
Bloodborne pathogens are microorganisms such as viruses, bacteria, or parasites which can enter the human blood stream causing diseases.

Examples of Bloodborne Pathogens:
Common examples include hepatitis B, hepatitis C, and HIV (human immunodeficiency virus)

How do they enter the bloodstream?
These microorganisms may be transmitted when mucous membranes or non-intact skin (cuts, abrasions, burns) come in contact with human blood or body fluids. Other modes of transmission include blood splashes, handling contaminated items, needle sticks or cuts from contaminated sharps.

What are Hepatitis Viruses?
Hepatitis is inflammation (pain and swelling) of the liver. Viruses that cause inflammation of the liver are called Hepatitis viruses.

Hepatitis B Virus

What is Hepatitis?
Hepatitis means inflammation, redness, swelling and soreness of the liver.
Hepatitis B Virus (HBV):
Hepatitis B is a contagious virus which causes inflammation of the liver.
How is Hepatitis B spread?
HBV is transmitted by sharing needles, razors, and toothbrushes. Body fluids, saliva and semen which are exchanged during sexual interactions cause transmission. HBV is also transmitted from mother to infant during her pregnancy.

Who is at risk for Hepatitis B?

·         Intravenous drug users

·         Sexual contact with partner infected with Hepatitis B

·         Living with someone with chronic Hepatitis B

·         Men who have sexual contact with other men

·         Having oral-anal sexual contact with someone who has hepatitis B

·         Traveling to a country with high rates of Hepatitis B

·         Health care and public safety workers, who have contact with blood or body fluids or blood contaminated products

·         Hemodialysis patients

·         Birth of a child to a Hepatitis B infected mother

What are the symptoms of Hepatitis B?
Most of the people newly infected with Hepatitis B do not show any symptoms. Most common symptoms if present include:

·         Fever

·         Fatigue

·         Jaundice (yellowing of the skin and/or eyes)

·         Nausea and Vomiting

·         Abdominal pain

·         Dark urine

·         Clay-colored bowel movements

·         Loss of appetite

How long do Hepatitis B symptoms last?
Symptoms may begin as early as 60 days or up to 150 days after exposure to HBV. 95% of the adults recover completely from HBV and do not become chronically infected. In contrast, 90% of infants and 35% of children under the age of 5 years will remain chronically (lifelong) ill with HBV.
What is the difference between acute and chronic HBV infection?
If a person was infected with hepatitis B for the first time it is called acute hepatitis. Usually acute (short term) hepatitis lasts for 6 weeks or less. Chronic (long term) HBV infection occurs in minority of the adults who were infected with HBV. In contrast, the majority of the infants who are exposed to HBV will have chronic (long term) HBV. Chronic infection may last 6 months or more.
What happens in chronic HBV infection?
15-25% of the people with chronic HBV, develop cirrhosis (liver damage), liver failure or liver cancer.
How is it treated?
There are no special treatments for acute hepatitis B infection.
For chronic infection, many antiviral drugs are available.

How can you prevent hepatitis B?

·         Avoid sharing of needles, toothbrushes and razors.

·         Protected sex (use of condom)

·         Universal protection for health care and public safety workers

·         Vaccines are also available for prevention of hepatitis B infection.


Who should get vaccinated against hepatitis B?

·         All children at birth

·         Those traveling to countries with high rates of hepatitis B

·         Sexual partners of people infected Hepatitis B virus

·         Men who have sexual contact with other men

·         Persons who uses injection or non-injection illegal drugs

·         Persons with end-stage kidney disease.

·         Health care and public safety workers

·         People with chronic liver disease

·         People who are being treated with clotting-factor concentrates

Hepatitis C Virus

What is Hepatitis C Virus?
Hepatitis C is a contagious virus which causes inflammation of the liver.

How is it transmitted?
Hepatitis C is transmitted by needle stick injury, blood, blood products, sharing needles,razors,toothbrushes, sexual contact with Hepatitis C infected person and birth to an infected Hepatitis C mother.

What is the risk of acquiring Hepatitis C after a needle stick contaminated with Hepatitis C blood?
HCV infection is about 1.8%.

What are the signs and symptoms of HCV?
Most of the people newly infected with Hepatitis C do not show any symptoms. Most common symptoms if present include:

·         Fever

·         Fatigue

·         Jaundice (yellowing of the skin and/or eyes)

·         Nausea and Vomiting

·         Abdominal pain

·         Dark urine

·         Clay-colored bowel movements

·         Loss of appetite

What is the difference between acute and chronic hepatitis C?
If a person was infected with hepatitis C for the first time it is called acute hepatitis. Usually acute hepatitis lasts for 6wks or less. Approximately 15-25% of patients infected will clear the infection without treatment. The majority of Chronic HCV infections occur in adults who wre infected with HCV. About 75-85% of patients will continue to have chronic (long term) infection.

What happens to chronic hepatitis C patients?
Majority (70-85%) of the infected people will develop chronic (long term) infection. 60-70% of them will have chronic liver disease. 5-20% of patients would develop chronic liver disease. 1-5% will die because of the complications of Hepatitis C.

Is there Hepatitis C vaccination?
There is no vaccine for Hepatitis C

How to prevent Hepatitis C:

·         Avoid sharing needles, toothbrushes, and razors

·         Protected sex (use of condom)

·         Universal protection for health care and public safety workers

HIV Virus

What is Human Immunodeficiency virus (HIV)?
Human Immunodeficiency virus (HIV) is the virus that causes AIDS
What is AIDS?
AIDS stands for acquired immunodeficiency syndrome. HIV infection causes suppression of the immune system (The immune system gives our bodies the ability to fight infections), which could lead to opportunistic infections and unusual types of cancer. AIDS may not develop for 8-10 years after the initial infection. AIDS is the final stage of HIV infection.
How is HIV spread?
HIV is transmitted by having sex (anal, vaginal, or oral), blood (sharing needles and syringes), and blood products/body fluids (semen, saliva etc) of an HIV infected person. It is also transmitted from HIV infected mother to infant during her pregnancy or breast feeding.

Who is at risk for HIV?

·         Drug or steroid users who share needles and syringes

·         Unprotected sex (heterosexual and homosexual)

·         Blood transfusion or clotting factor from 1978 – 1985

·         Health care workers who got stuck with needles containing HIV-infected blood or, less frequently after infected blood gets into an open cut or mucous membrane of the eyes or nose


What are the symptoms of HIV?
Most of the people newly infected with HIV do not show any symptoms for many years. Some people may get flu like symptoms for few weeks after becoming infected. Signs and symptoms may include:

·         Fever

·         Headache

·         Sore throat

·         Swollen lymph glands

·         Rash


What are the symptoms of AIDS?
AIDS may develop over an 8-10 year period after the initial HIV infection. AIDS is the final stage of HIV infection, when the immune system has been severely damaged, which can lead to opportunistic infections and unusual type of cancers. Signs and symptoms may include:

·         Night sweats

·         Chills and fatigue

·         Fever >100 F (38 C) for several weeks

·         Dry cough and shortness of breath

·         Chronic diarrhea

·         Persistent white spots or unusual lesions on your tongue or in your mouth.

·         Headaches

·         Weight loss


How long does the HIV infection lasts?
There is no cure for HIV infection. Usually HIV infection is a chronic condition.
How is it treated?
It is treated with multiple antiviral medications.
What is the risk of HIV infection to a health care worker?
The average risk for HIV infection from all types of reported percutaneous exposure (needle stick) to HIV infected blood is 0.3 %.

How can you prevent HIV?

·         Avoid sharing of needles, toothbrushes, of an infected HIV person

·         Protected sex (use of condom)

·         Universal protection for health care and public safety workers


Prevention of Blood Borne Diseases:
The Occupational Safety and Health Administration (OSHA) defined four principal strategies to prevent or reduce exposure to blood borne pathogens:

1.       Engineering controls

2.       Work practice control

3.       Personal Protective Equipment

4.       Universal Precautions

1.       Engineering Controls
Engineering controls refers to any object that comes between you and the potential infectious material.
•  Readily accessible hand washing facilities
•  Eye stations
•  Sharps containers
•  Biohazard labels
•  Self-sheathing needles or syringes with retractable needles
•  Needleless IV systems
Biohazard Labels:
These labels should be attached to bags or containers containing potentially infectious materials. These labels must be fluorescent orange or orange-red with letters or symbols in contrasting color.

Labeling of Regulated Waste:
Regulated waste must be labeled, on containers of regulated waste, contaminated sharps, on refrigerators and freezers that are used to store blood or other potentially infectious materials (OPIMs), and on containers used to store, dispose of, transport, or ship blood and OPIMs. Regulated waste containers must be labeled with biohazard label.
Needleless Systems and SESIP:
Sharps with Engineered Sharps Injury Protections (SESIP) i.e. needleless sharp or Needleless systems are required to reduce the risk of an exposure incident.

Contaminated Sharps:

·         Needles

·         Scalpels

·         Broken capillary tubes

·         Dental wires

Contaminated needles or other contaminated sharps must not be bent, or recapped. Needle removal or recapping needles must be accomplished through a one-handed technique or the use of a mechanical device. A sharps container must have a warning label affixed to it. Contaminated sharps must be discarded immediately or as soon as possible into an acceptable sharps container.
Reusable Sharps:
Reusable sharps, including pointed scissors must be decontaminated before reuse. Containers containing reusable sharps should be clearly labeled. Use forceps or tongs, to remove contaminated sharps form containers.

In Case of Injury:
If you are stuck by a needle containing blood or OPIMs, OSHA recommends the following:

·         HIV test and counseling

·         A test for HIV periodically for at least 6 months

·         Practice “safe” sex

·         Stop breastfeeding

·         Get immediate evaluation of any illness


Call Needle Stick Hotline from Department of Health and Human Services for free advice: (888)448-4911

2.       Work Practice Controls
Work practice controls must be evaluated and updated on a regular schedule to ensure their effectiveness.
Hand washing:
Hand washing is the most important method in preventing transmission of food borne or blood borne pathogens. It is required that you wash your hands after removal of gloves and other PPE.
Cleaning Work surfaces:
The work areas which involve exposure or potential exposure to blood or OPIMs, along with potential contamination of surfaces, must be cleaned regularly. The cleaning must occur at least weekly or after completion of tasks or procedures or at the end of a shift if there is a possibility of contamination. You should use disposable towels to clean up the spill and then dispose of the towels in a biohazard-labeled bag. Use a dustpan and brush, cardboard, or tongs, to clean up any contaminated broken glass, do not clean up with your hands.

3.       Personal Protective Equipment
Personal protective equipment (PPE) is considered a special equipment, clothing worn by you for protection against hazard. PPE prevents blood or OPIMs from passing through to or contacting your clothes, or directly to your body.


·         Gloves

·         Gowns

·         Aprons

·         Face shields

·         Masks

·         Eye protection

·         Laboratory coats


You must remove all PPE before leaving the work area.

4.       Universal Precautions
Universal precaution means you should treat all human blood and body fluids as if they contain HIV, HBV, HCV or other blood borne pathogen.
Exposure Control Plan:
Each employer should have an exposure control plan describing the guidelines for employees to follow when an exposure occurs.


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Comfort Kits


Goal: Gentle Care Hospice personnel were provided information and instructions regarding comfort kits a.k.a. emergency hospice kit or initial care kit. Contents of the comfort kit are available for emergencies to manage and for the palliation of symptoms that occur with terminal illness: psychosis, delirium, severe pain, gastric motility, terminal restlessness, anxiety, nausea and vomiting, constipation, agitation, panic attacks, and shortness of breath.

Sec. 418.96 Condition of Participation – Medical Supplies

Medical supplies and appliances, including drugs and biological, must be provided as needed for the palliation and management of the terminal illness and related conditions.

·         Standard: Administration. All drugs and biologicals must be administered in accordance with accepted standards of practice.

·         Standard: Controlled drugs in the patient’s home. The hospice must have a policy for the disposal of controlled drugs maintained in the patient’s home when those drugs are no longer needed by the patient.

·         Standard: Administration of drugs and biologicals. Drugs and biologicals are administered only by the following individuals:

1.       A licensed nurse of physician

2.       An employee who has completed a State approved training program in medication administration

3.       The patient if his or her attending physician has approved it

4.       Any other individual in accordance with applicable State and local laws

The persons, and each drug and biological they are authorized to administer, must be specified in the patient’s plan of care.

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Five Stages of Grief


By Elisabeth Kubler-Ross & David Kessler


Denial, Anger, Bargaining, Depression and Acceptance

The stages have evolved since their introduction and they have been very misunderstood over the past three decades. They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grief is as individual as our lives.

The five stages – denial, anger, bargaining, depression and acceptance – are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order. Our hope is that with these stages comes the knowledge of grief’s terrain, making us better equipped to cope with life and loss.



This first stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle.

As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface.


Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, yourself and your loved one who died, but also to God. You many ask, “Where is God in this?”

Underneath anger is pain. It is natural to feel deserted and abandoned, but we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss. At first, grief feels like being lost at sea: no connection to anything. Then you get angry at someone, maybe a person who didn’t attend the funeral, maybe a person who isn’t around, maybe a person who is different now that your loved one has died. Suddenly you have a structure—your anger toward them. The anger becomes a bridge over the open sea, a connection from you to them. It is something to hold onto; and a connection made from the strength of anger feels better than nothing. We usually know more about suppressing anger than feeling it. The anger is just another indication of the intensity of your love.


Before a loss, it seems like you will do anything if only your loved one would be spared. “Please God,” you bargain, “I will never be angry at my wife again if you’ll just let her live.” After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others? Then can I wake up and realize this has all been a bad dream?”

We become lost in a maze of “If only…” or “What if…” statements. We want life returned to what it was; we want our loved one restored. We want to go back in time: find the tumor sooner, recognize the illness more quickly, stop the accident from happening…if only, if only, if only. Guilt is often bargaining’s companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of this loss. We remain in the past, trying to negotiate our way out of the hurt. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage in a linear fashion. We may feel one, then another, and back again to the first one.


After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters out lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone. Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a loved one dies would be unusual. When a loss fully settles in your soul, the realization that your loved one didn’t get better this time and is not coming back is understandably depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way.


Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. We must try to live now in a world where our loved one is missing. In resisting this new norm, at first many people want to maintain life as it was before a loved one died. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them others or take them on ourselves.

Finding acceptance may be just having more good days than bad ones. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our loved one. We can never replace what has been lost, but we can make new connections, new meaningful relationships, new interdependencies. Instead of denying our feelings, we listen to our needs; we move, we change, we grow, we evolve. We may start to reach out to others and become involved in their lifes. We invest in our friendships and in our relationship with ourselves. We begin to live again, but we cannot do so until we have given grief its time.

At times, people in grief will often report more stages. Just remember your grief is as unique as you are.


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Grief in the Workplace


Grief affects all of us at different times and places in our lives. The workplace is not untouched by grief. Grief in the workplace occurs when you or a co-worker has experienced a personal loss or a workplace loss such as a death. It is important to remember that everyone grieves differently and everyone needs time to adjust to the loss. Here are some tips to help you and your co-workers cope with your grief:

Remembering Your Co-worker

·         Attend the funeral or memorial service of the person who died.

·         Create a memorial board. Encourage your co-workers to post messages or memories that remind them of your co-worker.

·         Consider holding a memorial service at your workplace. A brief service of remembrance can be helpful. Even if it just a time to set aside for you and your co-workers to acknowledge your unique relationships with your co-worker.

·         Remember the person at staff meetings or annual events. These are times when grief reaction can resurface for you and your co-workers.

·         Hold or join in a fundraiser for a special cause in memory of the deceased.

·         Stay in touch with the deceased’s family. Send a card or note to let them know you have not forgotten them or your co-worker.

Offering Support to Co-workers and Employees

·         Supporting each other and your employees will be essential to the grieving and healing process and maintaining a healthy workplace.

·         Know the company’s bereavement policies and ways the company can provide support.

·         Respect confidentiality and avoid gossip. If the deceased’s family is private about eh details, set that example for co-workers or employees.

·         Be flexible and support one another. What someone needs today may be different tomorrow.

·         Listen. Co-workers and employees may need to talk about the person who died for weeks or months to come.


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Home Safety


Many caregivers are supporting and caring for loved ones in their own homes, while others are caring for loved ones who are living in their own homes. Typically, most homes are not designed for caregiving.

Take some time to look closely at each room where your loved one or friend may spend time, paying special attention to the bedroom, bathroom, and hallways. With advice from your loved one or friend’s healthcare team, you may need to make some changes for the comfort and safety of all who live there, keeping these points in mind:


·         Are there handrails to help move from one room to another?

·         Is there a raised toilet seat for easier sitting?

·         Are there grab bars near the toilet and bathtub for safety in standing and lowering?

·         Are there nonskid mats on the bathroom floor and bathtub to prevent slipping and falling?

·         Are there nightlights for safety in moving around at night?

·         Are there working smoke alarms and fire extinguishers throughout the home? Do you periodically check to ensure they are operating properly?

·         Are emergency numbers – Fire, Hospital, 911 – and contact numbers by the phone or a convenient location?

If your loved one or friend is disabled, you will want to ensure that he or she:

·         Uses a cane or walker, if needed.

·         Has a clear path through each room, that there are no rugs or raised room dividers to trip over, and no slippery floors. You can carpet the bathroom with all weather carpeting to help prevent falls. This can be pulled up in sections if it is wet.

·         Is secure in his or her wheelchair. If your loved one or friend is weak, a tray that attaches to the wheelchair can prevent falls and provides a place for your loved one or friend’s drinks, magazines, etc.

·         Cannot fall out of bed. If the bed does not have guardrails, you can place the wheelchair or other guards next to the bed, and position your loved one or friend in the middle of the bed so that she or he can turn over without fear of falling.


Does your loved one or friend need:

·         A hospital bed or other special type of bed?

·         Walker and/or cane?

·         Wheelchair?

·         Bedside commode?

·         Lift?

·         Oxygen?


·         Can a wheelchair fit through the doorways?

·         Is a ramp needed on stairs?

·         Is it easy to walk or move from room to room without running into furniture?

·         Is there a nightlight for safety in moving around at night?


Quick, easy, and readily available ways to communicate with others are a must for you and your loved one or friend, especially in an emergency. You may borrow or purchase:

·         A cordless speaker phone with speed dial memory so that you can simply hit one button in an emergency and get help without compromising the safety of your loved one or friend. Also, phones with a large digital display for easy reading, and rig and voice enhancer, are helpful for people who have hearing problems.

·         A cellular phone, if you and your family member or friend travel or spend time outside the home.

·         A medical or home alert system which will summon help with the push of a button, if you occasionally leave your loved one or friend alone.

·         An intercom or baby monitor so you may listen to your loved one or friend when you are in another room.

·         A bell that your loved one can ring to ask for help without yelling.


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Informed Consent


REFERENCES: Medicare COP 418.62; JCAHO RI1.1; CHAP CI.4, HII.4a, HII.1e; NHPCO ARE3.2

PURPOSE: To ensure that patient has given informed consent prior to participating in the hospice program and for certain invasive procedures and HIV antibody testing

AFFECTED AREAS: Clinical staff and volunteers


1.       Patients will receive information about hospice services, treatments, or procedures prior to receiving such services, treatments, or procedures. There are three conditions that must be met before a patient’s consent can be considered valid, as follows:

A.    Capacity: Anyone over the age of majority (18) is legally permitted to give consent for medical treatments and procedures, providing he/she has the mental capacity to make choices and understand their consequences. (See policy “Patient Decision-Making Capacity.”)

B.    Information: The patient must receive enough information to make an intelligent decision. The patient should receive information that any reasonable practitioner would disclose under the same or similar circumstances.

C.    Voluntariness: The patient must sign the consent form voluntarily. This should be done without force, fraud, coercion, deceit, duress, or any other form of constraint.

2.    Patients and families are given an explanation of the hospice focus on palliative care during the admission visit and the informed consent form is signed and witnessed by the hospice staff member.

3.    If the patient is in a state that compromises his/her decision-making capability, consent will be obtained from a surrogate decision maker.

4.    The patient/caregiver is involved in the planning of care, including:

        A.    Scheduling of visits

        B.    Determination of care to be delivered

        C.    Personnel who will be involved in care

5.    The patient may refuse all or part of his/her care, to the extent permitted by law, and shall be informed of the potential consequences of such action.

6.    The patient receives information regarding technical procedures, such as:

        A.    The nature and purpose of the procedure

        B.    The expected benefit of the procedure

        C.    Potential problems related to the procedure

        D.    The likelihood of success of the procedure.

8.    The patient participates in decisions regarding changes in his/her plan of care, to the extent possible, and will be informed verbally or in writing of any reduction or cancellation of services at least five days prior to the change.

9.    Specific written informed consent must be obtained before the HIV antibody test may be performed.

A.    A competent adult may be tested only after specific written informed consent has been obtained.

B.    An incompetent patient, who, for whatever reason (comatose, mentally not competent) is unable to comprehend the nature and consequences of the proposed tests, may be tested after obtaining the substitute written consent of an individual with specific legal authority to consent (e.g., parent, guardian, conservator, or holder of a Durable Power of Attorney for Health Care Decisions) or, failing that, from the closest available relative.

C.    Deceased patients may be tested only after obtaining consent from the relative authorized to control disposition of the remains. Consent to autopsy or organ donations in accordance with the Uniform Anatomical Gift Act also authorize such HIV testing. Relatives authorized to control disposition of remains are as follows, in descending order of priority:

(1)  An “Attorney in Fact” appointed under Durable Power of Attorney for Health Care

(2)  The spouse

(3)  An adult son or daughter

(4)  Either parent

(5)  An adult brother or sister

(6)  A guardian or conservator of the descendant at the time of death

(7)  Any other person authorized or under obligation to dispose of the body


1.       Clinical staff performs the following:

A.    Explains the hospice focus on palliative care and the services available

B.    Explains the procedures to be performed and the outcomes expected

C.    Answers questions and concerns of the patient/caregiver

D.    Requests the patient to sign the consent form

E.    Witnesses the signature on the form

2.       Clerical staff performs the following:

A.    Receives and enters the date the forms were received into the tracking system

B.    Files the consent from in the patient’s central file

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Levels of Hospice Care


There are four distinct levels of hospice care that are based on a patient’s needs. Patients and their caregivers can rest easy knowing that their needs will be met with the appropriate level of hospice care.

Hospice care evolved in the United States with the intention to provide comprehensive services to patients at the end of life in the most comfortable environment possible. This is usually the patient’s own residence, whether the patient is living in their own home, in a family member’s home, or in a nursing care facility. There are times, however, that patients require more care than is possible to deliver with the usual scope of services provided by hospice. Adding to the problem is that under the Medicare Hospice Benefit, a patient is no longer entitled to hospitalization benefits under Medicare Part A. Because of this, hospice provides four levels of care to address patient needs:

Routine Home Care

Routine home care is the basic level of care under the hospice benefit. If a patient resides in a nursing home, it can also be called routine nursing home care. It includes:

·         Nursing services – A nurse usually visits 1-3 times per week based on patient needs. This can be more often if needed.

·         Physician participation – attending physician, following physician, hospice physician, and specialists as necessary

·         Medical social services

·         Home health aide services – A home health aide usually visits 2-3 times per week based on patient needs

·         Counseling services (pastoral, spiritual, bereavement, dietary, and others as necessary)

·         Medications

·         Medical equipment

·         Medical supplies

·         Lab and diagnostic studies related to terminal diagnosis

·         Therapy services (physical, occupation, speech) if needed

Continuous Home Care

If a patient develops physical or emotional symptoms that aren’t easily managed with routine care, continuous care may be an option. Continuous care provides more intense care in the patient’s home environment. A nurse and/or a home health aide will remain in the patient’s home environment for a minimum of 8 and up to 24 hours per day to administer medications, treatments, and support until the symptoms are under control. Some examples of symptoms requiring continuous care would be unrelieved pain, severe nausea and vomiting, severe shortness of breath, anxiety or panic attacks, or a breakdown in the primary caregiver support system. Continuous care is considered a short term level fo care and is reevaluated every 24 hours.



General Inpatient Care

Some patients may have symptoms so severe that they cannot get adequate treatment at home or they may feel more comfortable getting treatment at an inpatient facility. For these patients, inpatient care may be an option. Some patients may already be living in a facility that offers inpatient level of care and can benefit from its services. Others would have to be admitted to an inpatient facility.

Symptoms requiring inpatient care are the same as those requiring continuous care (above), only the setting of care may be different. With inpatient care, nurses are available around the clock to administer medications, treatments, and emotional support to make the patient more comfortable. There are three types of facilities that may offer inpatient hospice services:

·         Free standing facility – These are owned and operated by a hospice company and are staffed with hospice trained staff. There is a limited supply of these types of facilities and may not be an option for everyone in need.

·         Hospital – A hospice company may lease a unit in the hospital to provide inpatient care. In this case, hospice trained staff would provide around the clock care. A company may also have a contract with a hospital which would allow hospital staff to provide 24 hour care with hospice staff supplementing care.

·         Long term care facility – As with a hospital, a hospice company may lease a unit in a nursing home or contract with the nursing home to provide care.

As with continuous care, inpatient care is considered short term and would be discontinued once a patient’s symptoms were under control and they were comfortable. If the patient was admitted to an inpatient unit, they may then be discharged back home.

Respite Care

This level of care is used more for the family than for the patient. If the patient does not meet criteria to qualify them for continuous care or inpatient care but the family is having a difficult time, respite care may be an option. If a patient’s family is the primary source of care and cannot meet the patient’s needs due to caregiver stress or other extenuating circumstances, a patient may temporarily be admitted to an inpatient environment to give the family a needed break or respite. Respite care is limited to five consecutive days at a time. Once that period expires, the patient would be discharged back to home.

Determining Level of Care

A patient can be admitted to hospice on any level of care that is necessary at that time. A patient may also be transferred between levels of care as their needs change. The decision to treat someone on a higher level of care falls to the hospice physician and is documented by the physician and the hospice nurse. With four levels of care in place, no patient should ever be left in a crisis situation alone.


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Managing Nausea and Vomiting


Nausea and vomiting are common and distressing symptoms in many palliative care patients. Identifying the cause or causes and treating the symptoms promptly can increase comfort and quality of life.

What is Nausea and Vomiting?

Nausea is an unpleasant feeling in the stomach that may or may not be followed by vomiting. Vomiting is the sudden, forceful expulsion of the stomach contents which may or may not be preceded by nausea. They very often occur together but can can also occur independently of each other.

Nausea is very common as a patient moves toward the end of life. It is most common in patients with terminal cancer with more than half reporting this symptom. It is also common in patients with other diagnosis. It almost goes without saying that nausea and vomiting are distressing symptoms but, more importantly, they can prevent a patient from taking in adequate hydration and nutrition as well as important medications.

Causes of Nausea and Vomiting

There are several causes of nausea and vomiting. Noxious odors, tastes, or sights can sometimes trigger this response. Certain medications such as opioid analgesics (narcotic pain medications), NSAID’s, antibiotics, and chemotherapeutic agents can cause nausea as well. Physical changes in the gastrointestinal tract such as constipation or a bowel obstruction are yet other examples of causes. Because treatment of nausea and vomiting can largely depend what's causing it, your health care provider will do a thorough assessment to try to determine the cause.

Nausea and Vomiting Treatment

Treatment will begin with identifying the cause, and reversing it if possible. This may include removing or avoiding noxious stimuli, discontinuing unnecessary medications, and treating constipation. Medications to treat nausea and vomiting may be used when the cause is irreversible or the symptoms persist despite treatment. Medications may include:

  • Anit-emetics like Phenergen and Compazine
  • Anti-anxiety drugs like lorazepam
  • Metoclopramide(Reglan)
  • Haloperidol (Haldol)
  • Diphenhydramine (Benadryl)

There are many different ways to administer most of the common medications to treat nausea and vomiting, which is especially important if pills are regurgitated before digestion. Some patients may be given a liquid form of the medicine if they can keep it down. Sometimes medication will be given as a suppository (in the rectum) or even as a topical gel on the skin.

There are other treatments that can be given along with medication or used while you're waiting for a medication to arrive. Some things you can try include:

  • Provide fresh air and loosen the patients clothing.
  • Apply a cool compress to the patients forehead, neck, and wrists.
  • Avoid odors that can trigger an episode; avoid cooking heavily odored food and don’t wear perfume or after-shave when you will be close to the patient.
  • Offer small meals and limit drinks served with each one. Offer liquids at other times during the day but drinking too much liquid with food can cause vomiting.
  • Serve food cold, which can limit odors that can make a patient nauseated.
  • As with any symptom, be sure to contact your health care provider immediately. Prompt treatment will help ensure that the patient gets comfortable as soon as possible.


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What is POLST?

The POLST form is a medical order indicating a patient’s wishes regarding treatments that are commonly used in a medical crisis. As a medical order, emergency personnel – such as paramedics, EMTs, and emergency physicians – must follow these orders. Without a POLST form, paramedics and EMTs are required to provide every possible medical treatment to sustain life. Since the POLST is a medical order, once your health care professional signs it, it means that your treatment wishes will be known and should be followed during a medical emergency, regardless of where you are.

POLST is also helpful in guiding treatment after the initial emergency. The brightly colored form gives you a way to tell doctors, nurses, and other health care professionals what types of treatment you do and do not want. It is important that POLST orders show what treatments you want now, in your current state of health.

Advance care planning is different for each person. Everyone must think about their values and what is important for them at the end of their life. POLST is not for everyone; POLST is only for those individuals diagnosed with serious advanced illness. This section of the website will help you determine if POLST is something that would be helpful for you or for a loved one.

How do I use a POLST form?

The original POLST form always remains with the patient, regardless of whether the patient is in the hospital, at home, or in a nursing home. In a health care facility the form will be in the medical record. In a home setting the form should be placed in a visible location recognized by emergency medical personnel (usually the side or front of the refrigerator).

Some Medical Terms Used in POLST form

Advance Directives
Advance Directives are written instructions stating how you wish your medical decisions to be made if you become unable to make decisions for yourself. Sometimes Advance Directives are called living wills. Most states allow patients to appoint a person to make health care decisions on their behalf when patients cannot speak for themselves.

Antibiotics treat some infections (such as pneumonia) that can develop when a person is seriously ill. Antibiotics may also treat symptoms (such as with a bladder infection).

Artificial nutrition
When a person can no longer eat or drink by mouth, liquid food can be given to them by tube.

Cardiopulmonary resuscitation (CPR)
CPR attempts to restart breathing and/or the heartbeat of a person who has no heartbeat and/or has stopped breathing. It typically involves “mouth-to-mouth” and forceful pressure on the chest to restart the heart. This procedure may also involve electric shock (defibrillation) or a plastic tube down the throat into the windpipe to assist breathing (intubation).

Comfort measures
Comfort measures describes care that is undertaken with the primary goal of keeping a person comfortable (rather than prolonging life). On the POLST form, a person who requests “comfort measures only” would be transferred to the hospital only if needed for his or her comfort.

Intravenous (IV) fluids
IV fluids are administered directly into the vein via a small plastic tube (catheter). Typically, they are given on a short-term basis.

Mechanical ventilation/respiration
When a person is no longer able to breathe on his/her own, a plastic tube is put down the throat and a machine pumps air in and out of the lungs through the tube.

Tube feeding
On a short-term basis, fluids and liquid nutrients can be given through a tube in the nose that goes into the stomach (nasogastric or “NG” tube). For long-term feeding, a tube can be inserted though a surgical procedure directly into the stomach (gastric or “G” tube) or the intestines (jejunal or “J” tube).

Medical decision-maker
If you are unable to make decisions for yourself, most state laws allow a family member or designated surrogate to serve as your representative and make decisions for you. If you have completed a medical power of attorney or health care proxy, the person designated on that form will be your legal health care representative.


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Pain Management in Palliative Care


Pain is a complex symptom; there are several types of pain and many causes of it. Pain is also extremely personal and unique to the person experiencing it. For these reasons, pain management is also complex and deeply personal.

Management of pain in the palliative care setting has evolved a great deal in recent years. Physicians and patients often choose to take a multidirectional approach, using more than one type of treatment to alleviate pain.

Also ask what makes the pain worse, or provokes it. Again, it could be movement or lying on a particular side. It could also be eating or touch. This again will help you avoid things that cause discomfort and provide important clues to the physician.

Assessing Non-Verbal Signs of Pain

It was mentioned early that it can be difficult to assess someone’s pain if they are unable to verbalize it and/or unable to point to the FACES scale. There are some signs and symptoms that a patient may exhibit if they are in pain that can clue you in:

·         Facial grimacing

·         Writhing or constant shifting in bed

·         Moaning or groaning

·         Restlessness and agitation

·         Guarding the area of pain or withdrawing from touch to that area

The more symptoms a patient has and the more intense they are will give you a clue as to how much pain they may be in. You can then record their pain as “mild,” “moderate,” or “severe.”

Keep a Record

One of the most important things you can do for the person you are caring for is to keep an accurate record of their pain and their pain treatments. Once you assess their pain, record the severity and location and any medications or treatments that you gave them. Take note whether the medications ore treatments worked effectively. Also write down anything new they may have told you about what makes it feel better or worse. This is a great way to team up with your healthcare professionals to provide the best palliative care possible.

Example of a Pain Log

Pain Log


Level of Pain

Location of Pain

Medication/Treatment Given

11/26  9:00 am


upper abdomen

Morphine 10mg

11/26  1:00 pm


upper abdomen

warm compress to abdomen

11/26  5:00 pm


headache and upper abdomen

Morphine 10mg


What is Pain?

The answer to this question seems obvious – pain is pain, right?

Pain is pain, but it’s not all the same. The International Association for the Study of Pain (IASP) defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.” However, pain is a symptom that cannot be objectively assessed. I can’t look at a patient and know precisely what hurts, how badly, and what the pain feels like. Pain, therefore, is whatever the person experiencing it says it is.

Types of Pain

Pain can be divided into two categories: acute pain and chronic pain.

Acute Pain

Also known as “warning pain,” this type of pain comes on suddenly and signals that something is wrong inside the body. A classic example of this type of pain is an injury that results in a broken bone. The pain is sudden and warns the person that something has gone wrong. Infections, tumors, and internal bleeding are other examples. Acute pain can sometimes be eliminated by treating the underlying cause. A person may respond to chronic pain with fear, anxiety, and restlessness. If the underlying cause is untreatable, the pain may develop into chronic pain.

Chronic Pain

Chronic pain results when the underlying cause of pain cannot be treated. It is persistent and sometimes debilitating. This type of pain is often associated with a long-term or life-threatening illness. A person experiencing chronic pain may be depressed, withdrawn, and exhausted.

Physiological Types of Pain

It is easier to understand pain, locate its cause, and treat it by using physiological explanations of it. Pain can be divided into two types of physiological explanations: Nociceptive and Neuropathic.

Nociceptive Pain

This type of pain can either be somatic or visceral.

Somatic pain results from injury to parts of the body such as bones, joints, and soft tissues. It is usually well localized, and is often described as sharp, dull, aching, throbbing, or gnawing. Examples would include bone fractures, metastastatic cancer to the bone, tumors, and arthritis.

Visceral pain results from inflammation, distension, or stretching of the internal organs. It is not well localized and is often described as aching, cramping, deep pain, or pressure. Examples would include pain in the abdomen from a bowel obstruction and left arm/jaw pain from an acute myocardial infarction (heart attack).

Neuropathic Pain

Neuropathic pain results from injury to nerves in either the central nervous system or the peripheral body. It can be described as burning, tingling, shooting, stabbing, or shocking. Injury to the brain, brain tumors, diabetic neuropathy, and herpes zoster are all examples of things that may cause this type of pain. Neuropathic pain can be more difficult to treat that nociceptive.

Pain and Palliative Care

A person on palliative care or hospice may experience different types of pain. Pain may be related to the underlying disease of the hospice diagnosis. This type of pain is usually defined as chronic pain and can either be nociceptive or neuropathic. A person on palliative care or hospice may also experience acute pain. Some examples include pain from pressure ulcers (bed sores), injury from falls, or side effects from the underlying illness like internal bleeding secondary to liver disease.

Regardless of the type of pain, the severity of it, or the cause, palliative care and hospice are well equipped to treat it. Pain management is a primary goal of comfort care.



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Patient Rights and Responsibilities


REFERENCES: Medicare COP484.10-12; JCAHO R1.2.1; CHAP CI.6b-e; NHPCO ARE3-6

PURPOSE: To provide information to patients that describes their rights and responsibilities related to their care and how to communicate concerns to administration



1.       In support of the hospice philosophy of care, each patient is an active, informed participant in his/her plan of care. To ensure this involvement, the patient must be empowered with certain rights and responsibilities.

2.       Each patient receiving services from the agency shall, upon admission, be provided with and have explained patient rights and responsibilities. The patient receives a copy of the Patient Bill of Rights on or before acceptance for treatment.

3.       A patient who has been judged incompetent may have someone designate to act as his/her representative. The patient representative, on behalf of the patient, may exercise any of the rights provided by the agency policies and procedures.

4.       All patient rights policies are available to agency personnel, patients, and patient representatives, as well as other organizations and the interested public.

5.       In the event a communication barrier exists, if possible, special devices or interpreters shall be made available to the patient/family.

6.       The Patient Bill of Rights is used as a basis for the development of agency policies and procedures.

7.       All agency personnel, both clinical and non-clinical, will be oriented to patient rights and responsibilities during the orientation program and annually thereafter.


1.       The admitting clinician provides each patient and/or responsible patient representative with a written copy of Patient Rights and Responsibilities.

2.       The admitting clinician explains the patient rights and responsibilities to the patient prior to initiation of the patient assessment. This explanation will be in a language the patient can reasonably be expected to understand.

3.       The patient/family is informed at admission of:

A.    The ownership or control of the agency

B.    The right to participate in planning hospice care

C.    The value or purpose of any technical procedure that will be performed, including the benefits, risks, and who will perform the task/procedure and the right to refuse care

D.    The cost of services not covered by his/her insurance(s) that will be billed to the patient (explained verbally and in writing)

E.    The policy on the withholding of resuscitative services and the withdrawal of life-sustaining treatment, and making health care decisions

F.    The right to voice a complaint/concern regarding care or service without discrimination or reprisal for doing so

G.   The right to refuse all or part of his/her care to the extent permitted by law

H.    The right to participate in all aspects of care/service

I.     The right to confidentiality of information

J.     The right to privacy, security, and respect of property.

4.       The patient signs the Consent/Authorization/Information and Patient Bill of Rights forms. The original of both is kept in the patient’s permanent record with copies given to the patient. Patient refusal to sign will be documented in the clinical record, including the reasons for refusal.

5.       The admitting clinician documents that the patient has received the above copies.

6.       When the patient’s representative signs the Patient Bill of Rights form, an explanation of his/her relationship to the patient is documented in the clinical record.

7.       If the patient is unable to understand or accept his/her responsibilities, documentation in the clinical record is made.

8.       Supervisory visits with clinical disciplines will be conducted to assure these rights are honored/protected according to agency policy.



During admission, the patient receives a written copy of his/her responsibilities, including the following:

A.      Remain under a doctor’s care while receiving hospice services.

B.      Inform the hospice of any advance directives or any changes in advance directives and provide the hospice with a copy.

C.      Cooperate with the primary doctor, hospice staff, and other caregivers.

D.      Advise the hospice of any problems or dissatisfaction with patient care.

E.       Notify the hospice of address or telephone number changes or when unable to keep appointments.

F.       Provide a safe home environment in which care can be given; service may be terminated for conduct such that the patient’s or staff’s welfare or safety is threatened.

G.     Obtain medication, supplies, and equipment ordered by the patient’s physician if they cannot be obtained or supplied by the hospice.

H.      Treat hospice personnel with respect and consideration.

I.        Sign the required consents and releases for insurance billing and provide insurance and financial records as requested.

J.        Accept the consequences for any refusal of treatment or choice of non-compliance.

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Safe Medical Devices Act


Term: The Safe Medical Devices Act

Description: The Safe Medical Devices Act requires health-care professionals to report death or injuries caused or suspected to have been caused by a particular medical device to the FDA or the product’s manufacturer. It was designed so that the FDA could be quickly informed of these dangerous medical products and could then track or recall the product. The hospital must file the report within ten working days after the event is determined to need to be reported. The Safe Medical Devices Act was signed into law in 1990. It was an update to the Federal Food, Drug, and Cosmetic Act that was last modified in 1976. The 1976 law required new high-risk products to go through a premarket procedure. It required FDA approval based on clinical experience before a product could be marketed. This, however, proved insufficient as FDA employees lacked the necessary information to be able to make informed decisions about said devices. This is the reason The Safe Medical Devices Act was written into law.

A medical device is defined by the Safe Medical Devices Act of 1990 to include any instrument, apparatus, or other article that is used to prevent, diagnose, mitigate or treat a disease as to affect the structure or function of the body with the exception of drugs. A medical device can range from gauze sponges to implanted devices such as pacemakers.

Application: The act enables regulators to observe operability of a device and make necessary corrections to the functionality if something was wrong. Now the FDA could be quickly informed of dangerous medical products and could then proceed to track or recall the product for repair/replacement. The law gave the FDA newfound power to suspend approved medical applications under circumstances where usage of medical devices led to injury or death. The FDA could enforce a recall on items deemed unsafe and had the ability to fine manufacturers up to $15,000 for violating the safety provisions of the act.

Further provisions to the Safe Medical Devices Act of 1990 have since been updated through the signing of the Food and Drug Administration Modernization Act of 1997. Now doctor’s offices and hospitals are required to submit a report summary citing all device-related incidents within the last year of the previous submission. Also, manufacturers are no longer required to file status reports about the device problems to the FDA.

Medical professionals are obligated to report instruments suspected of causing harm to their patients to the FDA. Medical devices are now regulated under a program called MedWatch and in order to submit a report you must fill out a “Reporting Form 3500” found on the FDA’s website. Reports may also be submitted via phone, fax, or the mail however the hospital must file the report within ten working days after the event is determined to need reporting.



A medical device is a product which is used for medical purposes in patients, in diagnosis, therapy or surgery.  Whereas medicinal products (also called pharmaceuticals) achieve their principal action by pharmacological, metabolic or immunological means. Medical devices act by other means like physical, mechanical, physicochemical or chemical means. Medical devices are included in the category: Medical technology.

Medical devices include a wide range of products varying in complexity and application. Examples include tongue depressors, medical thermometers, blood sugar meters, total artificial hearts, fibrin scaffolds, stents, and X-ray machines.

The global market of medical devices reached roughly 209 billion US Dollar in 2006 and is expected to grow with an average annual rate of 6 - 9% through 2010.

Medical Device Definition

A device is:

·         "an instrument, apparatus, implement, machine, contrivance, implant, in vitro reagent, or other similar or related article, including a component part, or accessory which is:

·         recognized in the official National Formulary, or the United States Pharmacopoeia, or any supplement to them,

·         intended for use in the diagnosis of disease or other conditions, or in the cure, mitigation, treatment, or prevention of disease, in man or other animals, or

·         intended to affect the structure or any function of the body of man or other animals, and which does not achieve any of its primary intended purposes through chemical action within or on the body of man or other animals and which is not dependent upon being metabolized for the achievement of any of its primary intended purposes

The Food and Drug Administration has recognized three classes of medical devices based on the level of control necessary to assure the safety and effectiveness of the device:

Class I: General Controls

Class I devices are subject to the least regulatory control. Class I devices are subject to "General Controls" as are Class II and Class III devices. General controls include provisions that relate to adulteration; misbranding; device registration and listing; premarket notification; banned devices; notification, including repair, replacement, or refund; records and reports; restricted devices; and good manufacturing practices. Class I devices are not intended for use in supporting or sustaining life or to be of substantial importance in preventing impairment to human health, and they may not present a potential unreasonable risk of illness or injury. Most Class I devices are exempt from the premarket notification and/or good manufacturing practices regulation. Examples of Class I devices include elastic bandages, examination gloves, and hand-held surgical instruments.

Class II: General Controls with Special Controls

Class II devices are those for which general controls alone are insufficient to assure safety and effectiveness, and existing methods are available to provide such assurances. In addition to complying with general controls, Class II devices are also subject to special controls. A few Class II devices are exempt from the premarket notification. Special controls may include special labeling requirements, mandatory performance standards and postmarket surveillance. Devices in Class II are held to a higher level of assurance than Class I devices, and are designed to perform as indicated without causing injury or harm to patient or user. Examples of Class II devices include powered wheelchairs, infusion pumps, and surgical drapes.

Class III: General Controls and Premarket Approval

A Class III device is one for which insufficient information exists to assure safety and effectiveness solely through the general or special controls sufficient for Class I or Class II devices. Such a device needs premarket approval, a scientific review to ensure the device's safety and effectiveness, in addition to the general controls of Class I. Class III devices are usually those that support or sustain human life, are of substantial importance in preventing impairment of human health, or which present a potential, unreasonable risk of illness or injury. Examples of Class III devices which currently require a premarket notification include implantable pacemaker, pulse generators, HIV diagnostic tests, automated external defibrillators, and endosseous implants.

Medical Devices Incorporating RFID

In 2004, the FDA authorized marketing of two different types of medical devices that incorporate radio-frequency identification, or RFID. The first type is the SurgiChip tag, an external surgical marker that is intended to minimize the likelihood of wrong-site, wrong-procedure and wrong-patient surgeries. The tag consists of a label with passive transponder, along with a printer, an encoder and a RFID reader. The tag is labeled and encoded with the patient's name and the details of the planned surgery, and then placed in the patient's chart. On the day of surgery, the adhesive-backed tag is placed on the patient's body near the surgical site. In the operating room the tag is scanned and the information is verified with the patient's chart. Just before surgery, the tag is removed and placed back in the chart.

The second type of RFID medical device is the implantable radiofrequency transponder system for patient identification and health information. One example of this type of medical device is the VeriChip, which includes a passive implanted transponder, inserter and scanner. The chip stores a unique electronic identification code that can be used to access patient identification and corresponding health information in a database. The chip itself does not store health information or a patient's name.

Practical and Information Security Considerations

Companies developing RFID-containing medical devices must consider product development issues common to other medical devices that come into contact with the body, are implanted in the body, or use computer software. For example, as part of product development, a company must implement controls and conduct testing on issues such as product performance, sterility, adverse tissue reactions, migration of the implanted transponder, electromagnetic interference, and software validation.

Medical devices that use RFID technology to store, access, and/or transfer patient information also raise significant issues regarding information security. The FDA defines "information security" as the process of preventing the modification, misuse or denial of use, or the unauthorized use of that information. At its core, this means ensuring the privacy of patient information.

Four Components of Information Security

The FDA has recommended that a company's specifications for implantable RFID-containing medical devices address the following four components of information security: confidentiality, integrity, availability and accountability (CIAA).

·         Confidentiality means data and information are disclosed only to authorized persons, entities and processes at authorized times and in the authorized manner. This ensures that no unauthorized users have access to the information.

·         Integrity means data and information are accurate and complete, and the accuracy and completeness are preserved. This ensures that the information is correct and has not been improperly modified.

·         Availability means data, information and information systems are accessible and usable on a timely basis in the required manner. This ensures that the information will be available when needed.

·         Accountability is the application of identification and authentication to ensure that the prescribed access process is followed by an authorized user.

Although the FDA made these recommendations in the context of implantable RFID-containing medical devices, these principles are relevant to all uses of RFID in connection with pharmaceuticals and medical devices.

List of Medical Devices

High-risk devices

High-risk devices are life supports, critical monitoring, energy emitting and other devices whose failure or misuse is reasonably likely to seriously injure patient or staff. Examples include:

·         Anesthesia units

·         Anesthesia ventilators

·         Apnea monitors

·         Argon enhanced coagulation units

·         Aspirators

·         Auto transfusion units

·         Cardiac defibrillator, external or internal

·         Electrosurgical units

·         External pacemaker

·         Fetal monitors

·         Heart-lung machine

·         Incubators

·         Infusion pump

·         Invasive blood pressure units

·         Pulse oximeters

·         Radiation-therapy machines

·         Ventilator

·         Stent

·         An example of the stent used in an EVAR procedure

Medium-risk Devices

These are devices including many diagnostic instruments whose misuse, failure or absence (e.g. out of service) with no replacement available would have a significant impact on patient care, but would not be likely to cause direct serious injury. Examples include:

·         ECG

·         EEG

·         Treadmills

·         Ultrasound sensors

·         Phototherapy units

·         Endoscopes

·         Human-implantable RFID chips

·         Surgical drill and saws

·         Laparoscopic insufflators

·         Phonocardiographs

·         radiant warmers (adult)

·         Zoophagous agents (e.g., medicinal leeches; medicinal maggots)

·         Lytic bacteriophages

Low-risk Devices

Devices in this category are those whose failure or misuse is unlikely to result in serious consequences. Examples include:

·         Electronic thermometer

·         Breast pumps

·         Surgical microscope

·         Ultrasonic nebulizers

·         Sphygmomanometers

·         Surgical table

·         Surgical lights.

·         Temperature monitor

·         Aspirators

·         X-ray diagnostic equipment

·         Lensometer

·         Keratometer

Standardization and Regulatory Concerns

Starting in the late 1980s the FDA increased its involvement in reviewing the development of medical device software. The precipitant for change was a radiation therapy device (Therac-25) that overdosed patients because of software coding errors.FDA is now focused on regulatory oversight on medical device software development process and system-level testing.

A 2011 study by Dr. Diana Zuckerman and Paul Brown of the National Research Center for Women and Families, and Dr. Steven Nissen of the Cleveland Clinic, published in the Archives of Internal Medicine, showed that most medical devices recalled in the last five years for “serious health problems or death” had been previously approved by the FDA using the less stringent, and cheaper, 501(k) process. In a few cases the devices had been deemed so low-risk that they did not need FDA regulation. Of the 113 devices recalled, 35 were for cardiovascular issues. This may lead to a reevaluation of FDA procedures and better oversight.

Packaging Standards

Medical device packaging is highly regulated. Often medical devices and products are sterilized in the package. The sterility must be maintained throughout distribution to allow immediate use by physicians. A series of special packaging tests is used to measure the ability of the package to maintain sterility. Relevant standards include: ASTM D1585- Guide for Integrity Testing of Porous Medical Packages, ASTM F2097- Standard Guide for Design and Evaluation of Primary Flexible Packaging for Medical Products , EN 868 Packaging materials and systems for medical devices which are to be sterilized. General requirements and test methods, ISO 11607 Packaging for terminally sterilized medical devices, and others.

Package testing needs to conducted and documented to ensure that packages meet regulations and all end-use requirements. Manufacturing processes need to be controlled and validated to ensure consistent performance.

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What is Grief?


Grief is the normal and natural response to the loss of someone or something important to you. It is a natural part of life. Grief is a typical reaction to death, divorce, job loss, a move away from family and friends, or loss of good health due to illness.

Grief reactions may include:

·         Feeling empty and numb, as if you are in a state of shock

·         Physical responses such as nausea, trouble breathing, crying, confusion, lack of energy, dry mouth, or changes in sleeping and eating patterns

·         Anger—at a situation, a person or in general

·         Guilt about what you did or did not do

·         Withdrawal from family, friends and common activities

·         Difficulty focusing, working or making decisions

·         Questions about faith or spirituality; challenges to the meaning, value and purpose you find in life

Grief lasts as long as it takes to adjust to the changes in your life after your loss. This can be for months, or even years. Grief has no timetable; thoughts, emotions, behaviors and other responses may come and go.


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