What Is Hospice Care?
“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”
–Dame Cicely Saunders, founder of the first modern hospice
Hospice care is a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced, life-limiting illness. Hospice care provides compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.
The hospice philosophy accepts death as the final stage of life: it affirms life, but does not try to hasten or postpone death. Hospice care treats the person and symptoms of the disease, rather than treating the disease itself. A team of professionals work together to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice care is also family-centered – it includes the patient and the family in making decisions.
When should hospice care start?
Hospice care is used when a disease, such as advanced cancer, gets to the point when treatment can no longer cure or control it. In general, hospice care should be used when a person is expected to live about 6 months or less if the illness runs its usual course. People with advanced cancer should have a discussion with their family members and doctor to decide together when hospice care should begin.
Studies show hospice care often is not started soon enough. Sometimes the doctor, patient, or family member will resist hospice because they think it means “giving up” or that there’s no hope. It’s important to know that you can leave hospice and go into active cancer treatment any time you want. But the hope that hospice brings is a quality life, making the best of each day during the last stages of advanced illness.
Some doctors don’t bring up hospice, so the patient or family member might decide to start the conversation. If your treatment isn’t working anymore and you’ve run out of treatment options, you might want to ask your doctor or a member of your cancer care team about hospice.
What does hospice care provide?
All hospice providers must offer certain services. But they tend to have different approaches to service, staffing patterns, and types of support services offered.
Palliative care and symptom control
Palliative care may also be called supportive care, symptom management, or comfort care. It can be given separately from hospice care (for example, while still in active cancer treatment), but It’s often a part of hospice care if cancer is no longer being treated because it has worsened. Palliative care does not treat the cancer itself. Instead, it’s used to prevent or treat symptoms and side effects as early as possible.
As part of hospice care, palliative care looks at how the cancer experience is affecting the whole person and help to relieve symptoms, pain, and stress. It gives patients options and allows them and their caregivers to take part in planning their care. It’s about assuring that all their care needs are addressed. The specialized professionals who are part of the palliative care team can help look for and manage mental, physical, emotional, social, and spiritual issues that may come up.
The main goal of including palliative care into hospice services is to help patients be comfortable while allowing them to enjoy the last stage of life. This means that discomfort, pain, nausea, and other side effects are managed to make sure that you feel as good as possible, yet are alert enough to enjoy the people around you and make important decisions.
Home care and inpatient hospice care
Although most hospice care is centered in the home, there might be times when you need to be in a hospital, extended-care facility, or an inpatient hospice center. Your home hospice team can arrange for inpatient care and will stay involved in your care and with your family. You can go back to in-home care when you and your family are ready.
Since people differ in their spiritual needs and religious beliefs, spiritual care is set up to meet your specific needs. It might include helping you look at what death means to you, helping you say good-bye, or helping with a certain religious ceremony or ritual.
Regularly scheduled meetings, often led by the hospice nurse or social worker, keep family members informed about your condition and what to expect. These meetings also give everyone a chance to share feelings, talk about what’s happening and what’s needed, and learn about death and the process of dying. Family members can get great support and stress relief through these meetings. Daily updates may also be given informally as the nurse or nursing assistant talks with you and your caregivers during routine visits.
Coordination of care
The hospice team coordinates and supervises all care 7 days a week, 24 hours a day. This team is responsible for making sure that all involved services share information. This may include the inpatient facility, the doctor, and other community professionals, such as pharmacists, clergy, and funeral directors. You and your caregivers are encouraged to contact your hospice team if you’re having a problem, any time of the day or night. There’s always someone on call to help you with whatever may arise. Hospice care assures you and your family that you are not alone and can get help at any time.
For patients being cared for at home, some hospice services offer respite care to allow friends and family some time away from caregiving. Respite care can be given in up to 5-day periods of time, during which the person with cancer is cared for either in the hospice facility or in beds that are set aside in nursing homes or hospitals. Families can plan a mini-vacation, go to special events, or simply get much-needed rest at home while you’re cared for in an inpatient setting.
Bereavement is the period of mourning after a loss. The hospice care team works with surviving loved ones to help them through the grieving process. A trained volunteer, clergy member, or professional counselor provides support to survivors through visits, phone calls, and/or other contact, as well as through support groups. The hospice team can refer family members and caregiving friends to other medical or professional care if needed. Bereavement services are often provided for about a year after the patient’s death.
Is hospice care the same as palliative care?
Hospice care and palliative care both aim to provide better quality of life and relief from symptoms and side effects for people with a serious illness. Both have special care teams that address a person’s physical, emotional, mental, social, and spiritual needs. But although hospice care often includes palliative care, they are not the same thing.
How they are different
- When care is given:
- Hospice care is offered and provided for patients during their last phase of an incurable illness or near the end of life, such as in some people with advanced or metastatic cancer.
- Palliative care can be offered and provided at any stage of a serious illness.
- What other care can be given:
- Hospice care is provided when there is no active or curative treatment being given for the serious illness. “Treatment” during hospice care involves managing symptoms and side effects.
- Palliative care can be provided while the patient is receiving active treatment. In other words, it can be given at the same time as chemo, radiation, or immunotherapy for cancer.
- What the care team does:
- A hospice care team coordinates the majority of care for a patient, and communicates with the patient’s medical care team.
- A palliative care team is separate from the patient’s medical care team that’s giving and managing treatment for the illness, but communicates with the medical care team.