Grateful acknowledgement is given to the National Hospice and Palliative Care Organization for much of the material in this section.
|They offer a website specifically to assist families dealing with end of life issues. It is called Caring Connections.|
"Hospice care is a philosophy of care that accepts dying as a natural part of life." When death is inevitable, hospice care does not seek to hasten nor postpone it, but to help both the family and the patient accept it.
By agreeing to hospice care, you as the caregiver make a choice to enhance life for your dying family member. If your family member has a terminal disease or condition, he or she may want to die at home with the support of family, friends, and caring professionals.
Hospice care provides social, spiritual and physical support to the dying patient and his or her family. This is done through a team approach that emphasizes comfort measures such as pain management, and counseling to all concerned. All hospice care has professional medical oversight and supervision. Over 90% of hospice care is provided in the patient's home, though it may be provided in a nursing home or hospital.
Traditional care emphasizes the use of medical interventions, hospitalization and drugs to cure or control disease. Traditional care may involve aggressive and expensive high-tech medicine. The traditional approach is appropriate, when cure is possible. The traditional approach may also be the appropriate choice, when cure is not possible. However, it is not the only choice.
Hospice is not about death; it is about the enhancement of life during the time a person has remaining. It is also about helping the family participate in the process of preparing for the end of a phase of life. It is about reassurance, honoring choices, acceptance, understanding, dignity and respect.
The physical pain arising from a terminal illness may be debilitating and frightening. Hospice providers have the skills and resources to help a patient to live as pain-free, as comfortable, and as full a life as possible.
Palliative care is a system of pain management. This system begins with an agreement between the individual, physician(s), primary caregiver, and the hospice team that the expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancing the quality of life. The decision to intervene with active palliative care is based on an ability to meet stated goals rather than affect the underlying disease. It is a time when comfort for both the patient and the family becomes the focus, not curing the condition.
Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice and palliative care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.
Hospitals are now looking into palliative care as a component to traditional care. However, few hospitals have taken this step.
Remember that treatment of pain can come in many forms. It can be: medication, therapeutic exercise, heat therapy, cold therapy, electrical nerve stimulation, cognitive behavioral techniques such as meditation and guided imagery, psychological approaches, acupuncture, massage, anesthesiologic approaches such as epidurals, nerve stimulation, and surgical approaches. Beth Israel Medical Center offers more information on these methods of pain management.
The majority of hospice patients are cared for in their own homes or the homes of a loved one. “Home” may also be broadly construed to include services provided in nursing homes, hospitals and prisons. Some hospice organizations have an "in-house" facility for individuals who do not have family and for those whose declining health makes the family home an inappropriate place to continue to provide hospice care.
A doctor must authorize hospice care. However, the patient and the family may choose the hospice agency to use. When the doctor's referral is made, a hospice representative will visit the family to make an assessment. The patient's primary doctor will continue to be involved in care. A care plan will be developed to meet the needs of both the patient and the family. The plan will be developed by the hospice team which may consist of the family doctor, the primary caregiver, the nurses, the aides, the therapists, the social worker, the chaplain, etc. This family-centered plan will be unique for the particular patient and family needs whether they are physical, psychological, or spiritual. The goal is to help keep the patient as pain-free and lucid as possible, with loved ones nearby until death.
Hospice requires that a primary caregiver by available to give medications, provide some types of care, and to keep the hospice team informed.
The hospice nurse directs the care. Training and experience allow the hospice nurse to make decisions that would ordinarily by made by an attending physician. The hospice nurse is the liaison between the patient and the doctor and he or she will usually visit at least once a week. A hospice nurse is always on call.
Because round-the-clock, hands-on care is the hallmark of the hospice experience, hospice provides trained volunteers to aid the family and patients. They are generally available to provide different types of support to patients and their families including running errands, preparing light meals, staying with a patient to give family members a break, lending emotional support and companionship to patients and family members, and helping out with light housekeeping. Perhaps the most important task, however, is their ability to be good listeners.
In addition to providing for the physical comfort of the dying person, hospice provides social and spiritual support for the patient and his or her family. This support takes the form of time-off or respite for the primary caregiver, personal care, nutritional counseling, pastoral counseling, grief counseling, and help with legal and funeral arrangements.
Available services are typically:
- Physician services for the medical direction of the patient’s care
- Regular home visits by registered nurses and licensed practical nurses
- Home health aides and homemakers for services such as dressing and bathing
- 24 hour on call support
- Social work
- Medical equipment such as hospital beds
- Medical supplies such as bandages and catheters
- Drugs for symptom control and pain relief
- Volunteer support to assist patients and loved ones
- Physical therapy
- Speech therapy
- Occupational therapy
- Dietary counseling
- Counseling, including bereavement
- Respite care for the caregiver
- Hospice in-patient care, if necessary
- Chaplain services
Please note that available services may vary from hospice to hospice and from state to state.
Hospice care is for any person who has a life-threatening or terminal illness. Most reimbursement sources require a prognosis of six months or less if the illness runs its normal course. Patients with both cancer and non-cancer illnesses are eligible to receive hospice care. All hospices consider the patient and family together as the unit of care.
Does your family have Alzheimer's Disease? If so, read about the potential for hospice care during the end stage of the disease.
There are many ways to pay for hospice care. Private pay, private insurance, long-term care insurance, Medicare, Medicaid, veteran's benefits - all may be a resource for you depending on your individual situation. If these resources are not available, hospice care will be covered, often by charitable donations. No one is turned away for inability to pay.
If you have the opportunity, it is best to interview several hospice organizations. Talk to your doctor about hospice care providers as well.
Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), provides a wealth of easy to access information on care at the end of life. It is supported by a grant from The Robert Wood Johnson Foundation. Below are links to information they provide on choosing a hospice provider and/or palliative care program.
Also look for these things:
Most states have a licensure program that ensures that basic legal and operating standards are observed. Licensure will not necessarily ensure a standard of care. However, if your state requires a license and an organization fails to obtain one, that could indicate a serious problem. To find out if your state has a licensure program, contact your state aging agency.
Medicare Agency Certification
Medicare requires certification if an organization receives Medicare or Medicaid reimbursement for services. Certification involves meeting specific federal requirements for care and administration. Yearly reviews check to ensure that all requirements continue to be met. State health departments certify hospice organizations. Standards and enforcement vary from state to state.
Different types of health personnel may be certified by their professional associations. Certification usually involves passing a test and providing proof of education and/or work experience. Examples are social workers, home care aides, dietitians, therapists, etc.
This process is where a non-profit organization sets standards for care and a hospice organization voluntarily agrees to abide by the standards and be checked to ensure that they continue to abide by them. There are several accreditation organizations for hospices:
An agency that is bonded has paid money - a bond - that acts like an insurance policy for the agency. Should a consumer have a grievance that he or she chooses to take to court, any settlement against the agency would be paid from the bond.
The National Hospice & Palliative Care Organization offers a directory to help caregivers find a local hospice. You may call them at 800-854-3402 or visit their web directory.
North and South Carolina:
Enter zip code in "Hospice Locator" box in upper right corner.
The Hospice Association of America has developed the following Hospice Patients' Bill of Rights.
Hospice Patients' Bill of Rights
Patients have a right to be notified, in writing, of their rights and obligations before hospice care begins.
Consistent with state laws, the patient's family or guardian may exercise the patient's rights when the patient is unable to do so.
Hospice organizations have an obligation to protect and promote the rights of their patients, including the following:
Dignity and Respect
Patients and their hospice caregivers have a right to mutual respect and dignity.
Caregivers are prohibited from accepting personal gifts and borrowing from patients/families/primary caregivers.
In addition, patients have the right:
Patients have the right:
The hospice organization or the patient's physician may be forced to refer the patient to another source of care if the client's refusal to comply with the plan of care threatens to compromise the provider's commitment to quality care.
Patients have the right:
Patients have the right:
Quality of Care
Patients have the right:
The hospice organization shall assure that:
Hospice makes a commitment to the family of the terminally ill patient. Counseling and support is initiated when hospice first becomes involved. When the family member dies, hospice continues that commitment for up to one year with ongoing contact and assistance. They provide grief management and education. This may take the form of counseling, bereavement groups, telephone follow-up, educational materials and referrals to help the family through this emotional time.