Website Donated by
Jeffrey Schwertley
Web Design
digit@cruzio.com
How many times have you waited at a checkout stand or in a bank line? Do you remember traveling alone as a passenger on an airplane or bus? It is likely that if you have done any of these things you have encountered that individual who will spill out all his worries and woes to you at the drop of a hat. You probably noticed how relieved he looked after “getting it off his chest.” Maybe even thanked you for such good conversation. Curiously, though, you don’t recall saying more then “uh-huh” and “hmmmm.” After his departure you may have reflected that the information he gave you was probably a well-kept secret from some of the people closest to him.
To open up to another person may involve risk. To expose a sensitive part of your emotional self to someone can be a scary experience. Hospice offers the special opportunity to the patient/family to share feelings or thoughts that may never have been shared with anyone before. The patient/family may gain a sense of security. The self-disclosure and openness resulting from a conversation may be a big step toward working through a problem.
By sharing personal information with you the patient/family indicated a willingness to trust you. To maintain their trust in you as a listener and in hospice as a service, every patient/family’s right to confidentiality must be respected. If you have ever confided in someone you trusted only to have your secret spread around, detail by painful detail, you have felt the hurt, angry feelings that go along with broken confidence. What could happen if you relate to a non-hospice person the details of a specific situation? At least two negative consequences could occur to reduce our effectiveness as a service. Our credibility would decrease as word spread that we don’t keep personal information confidential. Second, a patient/family whose confidence is broken is less likely to encourage others to use our service.
The concept of confidentiality is vital to hospice effectives as a service. Confidentiality is also important for legal reasons. In order to maintain confidentiality, it is imperative that all volunteers observe the following policies:
• Under no circumstances should conversations be discussed outside the hospice office or training sessions. Exceptions to this is if you see a hospice staff person at a facility or coming or leaving a patient’s home. If you must share information at that time, please do so in a place where there are no other individuals around.
• All patient information (face sheets, referral/intake data, volunteer request information) containing information about the patient/family are to be held in extreme confidence.
Unfortunately, it is very easy to violate a patient’s confidentiality even when one does not intend to do so. Common areas that this tends to occur at are the following:
• Restaurants
• Public areas of a hospital/nursing home
• Elevators
• Rest Rooms
• Malls
• General discussions with family or friends
Before hospice service can be given to a patient and family, the law requires that the patient or other responsible person given informed consent and that their rights and responsibilities be explained to them. There are five important components, which are as follows:
1. The patient and family are given a signed copy of their notice of rights
2. The rights explain the respect the organization will have for patients, their belongings, and property
3. Patients should be notified of their right to confidentiality of medical record information
4. Patients must be kept apprised of financial arrangements related to care and coverage
5. Patients and caregivers must be given the California Department of Health Services hotline number
to register any complaints if they so wish.
For hospice patients, a special bill or rights have been developed that speaks to the human elements of the terminally ill person and their needs. It is as follows:
As we face death, what are our rights as human beings? This bill of rights was created at a workshop on “The Terminally Ill Patient and the Helping Person,” sponsored by the Southwestern Michigan Insurance Education Council and conducted by Amelia J. Barbus.
I have the right to be treated as a living human being until I die.
I have the right to maintain a sense of hopefulness, however changing its focus may be.
I have the right to be cared for by those who can maintain a sense of hopefulness, however changing this might be.
I have the right to express my feelings and emotions about my approaching death in my own way.
I have the right to participate in decisions concerning my care.
I have the right to expect continuing medical and nursing attention even though “cure” goals must be changed to “comfort” goals.
I have the right not to die alone.
I have the right to be free from pain.
I have the right to have my questions answered honestly.
I have the right not be deceived.
I have the right to have help from and for my family in accepting my death.
I have the right to die in peace and dignity.
I have the right to discuss and enlarge my religious and/or spiritual experiences, whatever these may mean to others.
I have the right to expect that the sanctity of the human body will be respected after death.
I have the right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death.