During an illness that is terminal, you or your loved ones may talk with your doctor and decide the treatments meant to cure or slow a disease are no longer working, or you’re ready to stop them. Your doctor can make a referral for hospice care, also known as end-of-life care.
You want relief from pain, shortness of breath, and other symptoms so that you can focus on the people and things you care about the most. That's when hospice, or end-of-life care, may help.
Some people might think using hospice means they're giving up. Others may worry that they won’t get the medical care they need. But the service simply focuses on the quality of your life instead of trying to cure a disease.
Your team may include a doctor, nurse, social worker, counselor, chaplain (if you’re religious), home health aide, and trained volunteers. They work together to meet your physical, emotional, and spiritual needs.
Hospice is for family members, too. It offers counseling and help with practical things such as cleaning house and shopping.
When Can I Join Hospice Care?
You may enter a program if your doctor states that you have a terminal illness and that death can be expected in 6 months or less. You can stay in hospice beyond that time if your doctor and the team decide you still have only a short time to live.
Hospice isn't always a permanent choice.
For example, if your kidneys are failing, you might choose the hospice program rather than continuing with dialysis. But you can still change your mind, stop hospice care, and start back on treatments. Other people may get better unexpectedly and quit the service with the option of returning later.
Hospice differs from palliative care, which serves anyone who is seriously ill, not just those who are dying and no longer seeking a cure.
Can I Stay at Home -- and Should I?
Hospice offers four levels of care, two of which happen at home. The four levels are:
- Routine Home Care. The most common level of hospice care, this includes nursing and home health aide services.
- Continuous Home Care. This is when a patient needs continuous nursing care during a time of crisis.
- General Inpatient Care. Short-term care during times when pain and symptoms can’t be managed without a hospital setting.
- Respite Care. Short-term care in a facility during times when the patient’s caregiver needs a break in caregiving.
You might decide you or your loved one wishes to stay where friends and family can visit freely. In fact, most people choose this option. A relative or friend usually serves as the primary caregiver.
You may also get care at hospice centers, hospitals, nursing homes, and other long-term care places.
You might want to think about these questions when deciding whether to stay at home:
- Just how ill is the person needing care and how do they feel?
- Can any pain be managed away from a hospital or nursing home?
- Is the main caregiver physically and emotionally able to provide what’s needed from home?
- If you are a caregiver and work, can you afford to cut back on your hours at work or leave your job?
- Will you be able to get the extra supplies you might need, such as a bedside commode or a wheelchair?
Your decision is personal, and each situation is different. But how you answer questions such as these will help you decide where to go.
What Happens Once I’m in Hospice?
Your team will come up with a special plan just for you and your loved ones. They will focus on making your pain and symptoms better. They will check on you regularly, and a member of the team is on call 24 hours a day, 7 days a week.
A doctor -- either your own or one connected with a program -- will give medical care. Nurses will also check on you. Aides will assist with things such as bathing, dressing, cleaning, and cooking.
Other services that are available include:
- Chaplain and spiritual services for you and your loved ones
- Social work and counseling
- Medicine to ease pain
- Medical equipment and supplies
- Advice on eating
- Physical and speech therapy
- Counseling for your loved ones
How Do I Find a Program?
Start by asking doctors, nurses, social workers, and friends for ideas. On the Internet, you can go to the website of the National Hospice and Palliative Care Organization. You can call the NHPCO at 800-658-8898. For languages other than English, call 877-658-8896.
You’ll want to ask the hospice what’s the role of your own doctor once care begins and whether the same nurse will visit during the week.
Here are some other questions you might want to ask:
- Is the program certified, licensed, and reviewed by the federal government or my state?
- How fast does the staff respond if my loved one has a problem with pain or trouble breathing?
- Is there a program to give caregivers some time away for errands or rest?
- Do staffers and volunteers get screening and training before they come into our home?
- How will I pay for this? Will insurance or Medicare cover part or all of this?
- How does hospice help us with grief and loss?