What is hospice care?
Hospice care is a philosophy of care that tries to help patients get care that’s in line with their wishes during the last months of their lives. This care addresses physical, emotional, psychological and spiritual comfort.
Hospice programs strive to give people a sense of control at the end stage of a terminal illness, such as metastatic breast cancer.
Hospice care doesn’t aim to shorten or prolong life, but rather to enhance the time remaining as much as possible.
Because hospice programs personalize care, they can help preserve quality of life and allow a person to die as comfortably and with as much dignity as possible.
Hospice care also provides support services to families.
Hospice and palliative care
What is palliative care?
Palliative care focuses on relieving or preventing symptoms (such as pain, fatigue, anxiety or depression), rather than treating the cancer. It’s an extra layer of care that can be given along with treatments for the breast cancer.
Palliative care is helpful throughout treatment for both early and metastatic breast cancer and is a standard part of breast cancer care. It’s not just for the end-of-life.
Once active treatment for the cancer ends, palliative care becomes the main focus of care, rather than a part of treatment.
Palliative care specialists partner with your oncology team to manage symptoms.
Palliative care specialists also address emotional, social and spiritual distress. They can help you and your family identify your hopes and worries. They can also help you decide whether the burden of further treatment for the cancer outweigh the benefits.
Learn about managing pain.
Hospice programs provide palliative care
Hospice programs provide comprehensive palliative care and can improve quality of life for patients and caregivers .
Palliative care specialists and hospice care providers can help with advance care planning. They can help patients identify the goals and values that will guide their care.
Understanding a person’s worries and fears about their health, including the things they feel are vital to quality of life, also helps guide care.
It may be helpful to see examples of questions a palliative care specialist or hospice care provider may ask, such as those in the Serious Illness Conversation Guide.
Where is hospice care given?
Hospice care is most often given at home, where the patient is usually the most comfortable.
Sometimes, hospice care is in-patient care at an in-patient facility, such as a freestanding hospice house, nursing home or at a hospital with hospice services. Some people prefer to get hospice care in these settings and sometimes, certain situations prevent someone from staying at home.
The hospice care team
All hospice care teams must include a:
- Registered nurse who usually visits 1-2 times a week or more, depending on the need (consultation with a nurse is available by phone 24 hours a day, 7 days a week)
- Home health aide(s) who can help with personal care
- Medical director who works with your oncologist and the hospice team to coordinate the medical care
- Social worker
- Spiritual counselor (for example, a chaplain)
- Grief counselor(s) (for patients and their families)
Most often, a family member becomes the primary caregiver. The hospice team gives them guidance and support.
The hospice team will develop a plan of care with you and your loved ones, including the schedule of visits.
Family members or other caregivers provide most of the care each day.
Who can enroll in a hospice program?
Hospice care can begin when a person has a life expectancy of 6 months or less, if the disease takes its usual course (as estimated by the person’s doctor and confirmed by the hospice program’s medical director) .
Some hospice programs only enroll people who have stopped active cancer treatment. Others enroll people who are still getting cancer treatment. These are sometimes called “open access” programs.
Do not resuscitate (DNR) orders are not required for hospice
A DNR order isn’t required to enroll in a hospice program. CPR (cardiopulmonary resuscitation) can still be given if a person stops breathing or their heart stops beating. If a person is not DNR, the hospice team will call 911 and the responders will perform resuscitation.
Does hospice care have a time limit?
Although an estimated survival time period is required for enrollment (6 months or less), hospice care doesn’t have a time limit.
A person enrolled in a hospice program may live longer than 6 months and hospice care will continue.
Who covers the cost of hospice?
The cost of hospice care is covered by:
- Health maintenance organizations (HMOs)
- Most private insurance companies
Hospice programs cover the cost of the hospice staff on the care team as well as any medicines, oxygen, equipment and supplies, such as hospital beds and shower chairs, related to breast cancer care .
Talk to your insurance company about the details of your coverage. Your hospice team can also help you understand your coverage as they check your benefits as part of the hospice enrollment process.
Benefits for patients
Although treatment for the cancer may stop once hospice care begins, treatments to improve quality of life and ease symptoms continue.
This care includes [111,116]:
- Control of pain, nausea and other symptoms
- Treatment for non-cancer health conditions
- Emotional and psychological support
- Help with practical concerns, such as financial issues or child care
- Help with decisions about whether or not to attempt resuscitation (emergency measures if your heart stops beating, such as do not resuscitate (DNR) or do not intubate (DNI))
- Help with achieving remaining goals in life
- Relief for caregivers
- Spiritual and grief counseling
Benefits for caregivers and other loved ones
Hospice care provides special support to caregivers.
Home health aides can give caregivers a break throughout the week. And, when a caregiver is called away or needs a longer break, hospice care can be moved to an in-patient facility for up to 5 days a month . This may be called respite care.
The hospice team may be able to help ease some of the distress and emotional burden caregivers often feel during this time [117-118].
Grief and bereavement (loss) counseling are important parts of hospice care. This counseling begins while the patient is alive and continues for a year after the patient has died.
When should a person enroll in a hospice program?
Hospice care at any time is helpful but enrolling earlier rather than later is better for the patient and the family.
The earlier the enrollment, the more time the hospice team has to get to know the patient and the family so they can give the best personal care possible.
Your oncologist may suggest hospice when your disease is far enough advanced and the options for treatment of your cancer have been exhausted.
Discussions about end-of-life care are very difficult.
As hard as it can be to talk to your family and health care providers about end-of-life issues, these discussions help make sure your wishes are carried out.
With your guidance, hospice care can make the later stage of cancer care as comfortable as possible for you and your family.
Learn more about metastatic breast cancer.
Learn more about managing pain.
American Academy of Hospice and Palliative Medicine
Offers information on end-of-life planning and hospice, including a list of questions to help you assess hospice care programs.
American Society for Clinical Oncology (ASCO)
Offers a guide for patients and their families to help make decisions on end-of-life care.
National Hospice and Palliative Care Organization
Offers information on end-of-life planning and care for patients and families.
National Institutes of Health (NIH)
Offers information on end-of-life planning and care, including questions you may want to ask your health care provider.
This can be a very hard time for you and your family.
Your health care provider or hospital can help you find a counselor or a support group to help you address and manage the feelings and emotions that come with this stage of cancer care.
Support for family and loved ones is also important.
Learn more about counseling and other types of support for people with metastatic breast cancer.
Learn about support for family and loved ones.
SUSAN G. KOMEN® METASTATIC BREAST CANCER SUPPORT RESOURCES
Read our perspective on palliative care, hospice and metastatic breast cancer.*
*Please note, the information provided within Komen Perspectives articles is only current as of the date of posting. Therefore, some information may be out of date.