Your Hospice Rights

Your Hospice RightsIf you are considering hospice care for yourself or a loved one, you might want to know about Hospice Patients Alliance (HPA). This group was formed in August 1998 as a non-profit means to serve the U.S. public with health care rights in a hospice situation. HPA was founded by nurse Ron Panzer, and the group was formed by hospice staff and health care professionals who felt that some patients were not receiving adequate death care during the end-of-life cycle.

HPA promotes quality care whether a patient is enrolled in a licensed hospice or not, whether residing at home or in a facility. HPA is rare in that it is one of the very few true “watchdog” advocacy groups that truly serves hospice patients, families and caregivers. They are dedicated to promoting the welfare of the hospice patients, their families and/or caregivers. No member of their Board of Directors can be an employee or administrator in any hospice Agency or hospice lobbying groups.

HPA can help you learn about many hospice issues. For instance, did you realize that there are four levels of required services that hospices must provide? The hospice must inform you about all these levels of care when you consider admission to hospice services. If the hospice’s “informed consent” form does not list the following four levels of care, think carefully about whether you want to use their services.

A hospice that provides the following levels of care and lists them clearly in their “informed consent” form is more likely to provide the required services, especially if your request them and remind the hospice that you have this service ‘in writing.’

  1. Routine Home Care: Routine home care includes case manager visits, social worker visits, access to a chaplain, counselors, dietitian, therapy and more. Additionally, you have access to 24-hour hospice-registered nurses who can answer your questions. These services are part of the “hospice benefit” reimbursed by Medicare, Medicaid or private insurance.
  2. Continuous Nursing Care at Home: If you choose to stay at home for death care, continuous around-the-clock nursing care in your own home is your right if the you (as the patient) or the your loved one is having symptoms which are “out of control.” According to HPA, “This standard of care applies whether you reside in your own home in the community, a foster care home, assisted living facility, apartment or even a nursing home…all of these locations are considered ‘your own home.'” However, the patient cannot be forced into a facility if the patient wants to remain at home.
  3. Inpatient Care Level of Services: If your loved one is already residing at home or in a hospice facility and the symptoms become uncontrolled, you can inquire about placing the patient on “In Patient Level of Services” so that he or she can get the special attention required. In some instances, the patient may be temporarily placed in an acute care hospital (transferred from home) if there is no hospice facility.
  4. Respite Level of Care: If the family needs a break with taking care of an in-home patient, respite care is there to save the day. The patient, if willing, is temporarily placed in a facility up to five days so that the family can get rest from the seemingly never-ending list of things to do which are part of the patient care routine. After that time, the patient is transferred back home.

If you want to learn more about your hospice rights and even more about deathcare management, be sure to visit the HPA site. Their resources are numerous and helpful to anyone who is considering the ability to die at home.

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