Understanding Your Options at the End of Life
There are many options and tools available to help you plan and prepare for your health care at the end of life. A brief explanation is provided below so you may explore the issue further with your health care provider. Learning about your options for end of life care will help you make the best decisions for you and your family.
Understanding Your Diagnosis and Prognosis
"Disease-targeted treatment" or "curative treatment" refers to treatments that attempt to cure an illness. You have a right to understand how much time your health care providers would expect you to live with and without disease-targeted treatment. This is often referred to as "prognosis." Understanding prognosis is critical to making end of life decisions. You have the right to ask your provider directly for his or her thoughts on your prognosis whether or not you pursue disease-targeted treatment. If you do not understand the doctor's explanation, it is your right to ask for a different explanation until you feel that all your questions have been answered.
Comprehensive pain and symptom management, support for you and your family and help with decision making is called palliative care. Palliative care can be provided along with disease-directed treatment or it may become the only focus of care.
- Palliative care is specialized medical care for people with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
- Palliative care is provided by a specially trained team of doctors, nurses, social workers and other specialists who work together with a patient's doctors to provide an extra layer of support. It is appropriate at any age and at any stage of a serious illness and can be provided along with curative treatment.
- Palliative care may be provided as a consultation service when you are in the hospital. For some people, palliative care is available in the community through clinics and some home care programs. At the end of life, when no disease-targeted therapies are being pursued, palliative care in the community is best provided through hospice.
Source: getpalliativecare.org/whatis.
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Accessing Community Services and Hospice Care
At the end of life, when you may no longer wish to continue disease-targeted therapies, hospice can provide palliative care to you in your home. Hospice is specialized end of life care that attends to patients' needs in order to enhance their quality of life. Care is provided by a team of health professionals, skilled in pain and symptom management, providing comfort and care to patients and their entire family. The goal of hospice during a terminal illness is compassionate care and comfort rather than a cure. To be eligible for hospice, a doctor must verify a prognosis of six months or less of life, if the patient's illness runs its natural course.
Hospice team members care for you during visits to your home or wherever you live. In addition to scheduled visits, hospice nurses are on-call 24 hours a day, seven days a week, to answer questions or make an emergency visit. During hospice visits, the team provides patients with:
- Pain and symptom management
- Medical care, including medical supplies and equipment, and hospice medications
- Counseling about practical issues, including your health care wishes, planning for your financial needs, and tapping benefits or additional support from other agencies
- Help ensuring your physical safety in your living environment
- Personal care, including bathing and dressing when needed
Team members also offer patients and their families:
- Education about end of life
- Caregiver education and training
- Emotional counseling and grief support
- Spiritual comfort, in keeping with your values, beliefs and convictions
Some signs that you may want to consider hospice care:
- You have decided that you no longer wish to continue disease-targeted treatments
- Your pain and symptoms are beyond what you can or want to tolerate
- You want to focus more on maximizing your quality of life
You can ask your health care provider to refer you to a local hospice agency. The hospice will be able to discuss local options for care at home or in a health care setting.
Source: Modified from hospicebythebay.org.
Additional resource: Hospice and Palliative Care Basics
Advance Health Care Directives
You have a right to know about the choices for care at the end of life. Sharing your choices with your health care providers helps us to take better care of you and your family. The Advance Health Care Directive Kit and Physician Orders for Life-Sustaining Treatment (POLST) are tools that help your family and your health care teams know what is important to you. This includes the right to refuse or withdraw life-sustaining treatment.
PREPARE is an excellent resource that can help you with important decisions and ensure that your wishes are respected. PREPARE is easy to use and will explain the kinds of decisions you may want to think about.
Physician Orders for Life-Sustaining Treatment
A Physician Orders for Life-Sustaining Treatment (POLST) form is intended for any adult, 18 years of age or older, with serious health conditions. The POLST form accomplishes two major purposes:
- It is portable from one care setting to another.
- It translates the individual's wishes into actual physician orders.
We recommend making a POLST because:
- POLST represents your wishes as clear medical orders to your health care providers. POLST may improve your chances of getting the kind of care you want and avoiding what you do not want at the end of life. We recommend POLST to all our seriously ill clients.
- You (or your health care agent) and your physician may use POLST to write clear and specific medical orders that indicate what types of life-sustaining treatment you want or do not want at the end of life. Both the patient and a physician must sign the bright pink form in order for it to be honored by other health care professionals.
- No witnessing or notarization is required.
- Emergency Medical Services (EMS) personnel are required to honor POLST, and it remains with you if you are transported between care settings.
UCSF Health medical specialists have reviewed this information. It is for educational purposes only and is not intended to replace the advice of your doctor or other health care provider. We encourage you to discuss any questions or concerns you may have with your provider.
