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• Gradual withdrawal of emotional energy invested in the dying person.
There are many ways that you can care for yourself during your loved one’s illness that can lessen the negative aspect of anticipatory grieving. Plan to have some time for yourself every day. Seek out ways to nurture yourself, including eating well, sleeping enough, exercising, and spending time with a friend for hugs and laughs.
The Grieving Process A wide variety of feelings and behaviors can be experienced in the grief process. Not everyone will respond to loss in the same way. It is helpful to know
that the following characteristics can be a normal part of the grief experience:
Feelings. Feelings that are part of the grieving process can include shock, numbness, a sense of unreality, anger, irritability, guilt, self-reproach, 46 A Patient & Family Guide to Hospice Care sadness, depression, anxiety, fear, hysteria, helplessness, vulnerability, low self-esteem, loneliness, relief, feelings of being crazy, mood swings and increased intensity of all feelings.
Thought patterns. Grief-related thought patterns can include disbelief; a sense of unreality; preoccupation; confusion; lack of ability to concentrate;
seeing, hearing or feeling the presence of the deceased; thoughts of selfdestruction; problems with decision making.
Behaviors. Behaviors while experiencing grief include appetite and sleep disturbances, absent-minded behavior, social withdrawal, avoiding reminders of the loss, dreams of the loss, searching and calling out for the deceased, restlessness, sighing, crying, visiting places that are reminders of the loss, treasuring or carrying objects that belonged to the deceased, change in sexual activities, need for touch, hugs, contacts with others, increased sensitivity to positive and negative attention, assuming the mannerisms of the deceased, and exhibiting symptoms of the deceased’s illness.
• Access your support system. Reach out to people who are supportive to you. Family, friends, support groups, clergy or a therapist may be helpful.
• Share your feelings of grief. Talking about your feelings can be a relief.
Don’t hide your emotions from those who care about you.
• Educate yourself about grief issues. Reading literature about grief can help you understand what you are experiencing.
• Take care of your physical self. Remember that your emotional state can be affected by your physical state. Attempt to eat balanced meals, get adequate sleep, and do some form of exercise each day.
• Avoid alcohol and other substances not prescribed by your physician.
Although they may numb the emotional pain initially, drugs and alcohol may prolong, delay and complicate your grief.
• Give yourself permission to say “no.” Try not to rush or take on new responsibilities.
• Be patient and gentle with yourself. Healing from grief takes time. Your grief may not look like the grief of others around you. Respect your own individual grief style.
Helping Children Deal with Their Grief Children process grief and loss differently than adults do. For example, they may be repetitive in dealing with their loss. As they reach each new level in their own growth, they use their newly acquired skills and maturity to gain further understanding of their grief. The child’s history of loss and coping strategies, as well as the child’s age and developmental stage, will affect how they experience their loss and the grieving that goes with it.
It’s also true that children grieve not only in their own right, but also as part of a family. When a loved one is diagnosed with a terminal illness, it affects the way in which the family functions. Family roles and responsibilities may adjust to accommodate the new needs in the family structure.
Children may grieve not only for the dying loved one, but also for the secondary losses which result – for example, changes in routine, decreased attention from parents, increased individual responsibilities, etc.
If there are children involved in your hospice situation, feel free to discuss their needs with the hospice social worker.
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Arrangements Location of service: ________________________________________________________________________________
Time of service: ____________________________________________________________________________________
Do you wish to hold visiting hours before the service? _________________________________________
When? __________________________ Where? __________________________________________________________
Do you wish to have a reception after the service? ______________________________________________
When? __________________________ Where? __________________________________________________________
Scripture readings/other readings:
Eulogies/personal statements or recollections:
Other important elements:
52 A Patient & Family Guide to Hospice Care Participants
Person(s) of ciating:
Levels of Care Routine Care When symptoms are well managed, patients require less intensive care. This level of care is generally provided in your home or in a setting of your choice. However, Medicare and other insurance plans do not cover room and board costs.
General Inpatient: (Acute Care) Admission or transfer into General Inpatient Care Unit may be required to control a patient’s pain or other acute symptom management. The team’s efforts are directed toward resolution of the symptoms that prompted the admission. This level of care must be in an inpatient setting where more physician and nursing care is available.
General Inpatient Unit is for patients whose condition necessitates an inpatient setting. These stays are most often viewed as transitional, to control symptoms until the patient can return home or can be cared for in a less acute setting.
Services provided are consistent with the philosophy of the Hospice and are coordinated by a team of professionals. The team consists of a physician, skilled nurses, certified nursing assistants, medical social workers and spiritual counselors.
Continuous Care To maintain a patient at home this level of care may be needed to achieve acute symptom management during a medical crisis. This period is generally limited to a short period of time.
This level of care requires a minimum number of skilled care during a 24 hour period.
Respite Care Respite care in an inpatient unit is to provide a rest for family or those persons caring for the patient at home. The Hospice Medicare respite benefit allows up to a five-day stay for this level of care.
54 A Patient & Family Guide to Hospice Care Advanced Directives “Advanced Directives’ are written instructions concerning your wishes about your medical treatment. These instructions are used in the event that you are unable to make health care decisions yourself. You are not required to have advanced directives in order to receive care and treatment.
If you have questions about ‘advanced directives” or want to assistance in preparing advanced directives, please speak with your social service counselor or Interdisciplinary Team member.
Notice of Privacy Practices A notice of Privacy Practice is a federal law privacy regulation, which governs the use and disclosures on individually identifiable health information.
Halcyon Hospice and Palliative is notifying you of the ways your health information may be used and shared with other agencies, your rights to access your information and how you may limit us form sharing it with others.
Halcyon Hospice and Palliative Care under Health Insurance and Portability Act (HIPPA) may use
your health information for the following purposes:
• Treatment: For coordinating care with other agencies such as your physician, care center, staff members, pharmacists and suppliers of medical equipment or community resources for you, your caregivers and family.
• Payment: This disclosure of information is necessary to obtain payment for your care.
• Operations: For health care operations we may disclose information to another covered entity
for limited operational use:
- Certification, licensing or credentialing activities.
- Reviewing and auditing medical records, including compliance, medical or legal reviews.
- To local or state agencies required by law regarding risks to public, injuries, incidents of neglect, abuse or violence and certain diseases.
- Performance evaluations of staff, volunteers, students, interns and contracted personnel.
• Other examples of when health information may be shared
- In cooperation with law enforcement agencies and health oversight agencies required by law if your health information is directly related to an investigation, including investigations of abuse and neglect.
- Providing information about your general health status to family members or people you have designated. A patient identifier (determined by agency) must be supplied before information will be released. All other inquires will be referred to the family.
Written authorization must be obtained for information shared that is not related to treatment, payment or operations and that is not required by law.
You have the right with respect to use and disclosure of your protected health information.
• To inspect and/or to request to amend copies of your health information.
• To request an accounting of agencies and individuals with whom information has been shared with in the past, outside of routine disclosures for treatment, payment and operations.
• To receive confidential information in a certain way and request how information is used and shared.
The hospice will apply reasonable safeguards against incidental uses and disclosures of Protected Health Information and implement minimum necessary standards.
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Hospice has always protected the confidentiality of health information by sealing medical records away in file cabinets and refusing to reveal your information. Today, state and federal laws also attempt to ensure the confidentiality of this sensitive information.
The federal government recently published regulations designed to protect the privacy of your health information. This “privacy rule” protects health information that is maintained by physicians, hospitals, hospices, and health plans. The “privacy rule” protects the confidentiality of your health information.
This new regulation protects virtually all patients regardless of where they live or where they receive their health care. Every time you see a physician, are admitted to the hospital/hospice, fill a prescription, or send a claim to health plan, your physician, the hospital or hospice care provider will need to consider the privacy rule. All health information including paper records, oral communications, and electronic formats (such as e-mail) are protected by the privacy rule.
This privacy rule also provides you certain rights, such as the right to have access to your medical records. However, there are exceptions; these are not absolute. We also take precautions in our office to safeguard your health information such as training our employees and employing computer security measures. Please feel free to ask our privacy officer about exercising your rights or how your health information is protected in our office.
The Notice of Private Practices, following this letter, explain our privacy practices and the privacy practices SeniorMed Pharmacy. These documents contain very important information about how your confidential health information is handled. They also describe how you can exercise your rights with regard to you protected health information, (PHI).
If you wish, you may also file a complaint with the Secretary of the U.S. Department of Health and Human Services. You may mail your complaint to U.S. Department of Health and Human Services, 200 Independence Avenue, S.W., Washington, DC 20201.
Notice of Privacy Practices This notice describes how medical information about you may be used and disclosed and how you can get access to this information. Please review it carefully.
I. Our Duty to Safeguard Your Protected Health Information SeniorMed is required by certain state and federal regulations to implement policies and procedures to safeguard your health information. Copies of our privacy policies and procedures are maintained in our business office. We are required by state and federal regulations to abide by the privacy practices described in this notice, including any future revisions that we may make to the notice as may become necessary or as authorized by law.
Individually identifiable information about your past, present, or future health or condition, the provision of health care to you, or payment for the health care treatment or services you receive is considered protected health information (PHI). Accordingly, we are required to provide you with this that contains information regarding our privacy practices to explain how, when and why we may use or disclose your PHI and your rights and our obligations regarding any such uses or disclosures. Except in specified circumstances, we must use or disclose only the minimum amount of PHI necessary to accomplish the intended purpose of the use or disclosure of such information.