What Is Hospice Care? End-of-Life Comfort Care

Hospice is a special type of care for people whose cancer treatment is no longer controlling the disease. It gives medical, psychological and spiritual support to the person with cancer and to the people who love them. A team of health care professionals works with patients and families. Together they provide the comfort and care people need closer to the end of life.

Hospice is a focus on caring, not curing. The goal is to help you live each day to the fullest. That means controlling pain and other symptoms, and making you as comfortable as possible. Hospice is not meant to hasten death. It is not meant to postpone it either.

These two kinds of care get confused often, and the difference matters:

• Palliative care is available at any point in a person's experience with cancer. Cancer treatment carries on while they receive palliative care.
• Hospice care shifts the focus. It is about relieving symptoms and giving support at the end of life.

Both hospice and palliative care bring comfort and support. The difference is the timing, and the goal of the care.

Choosing hospice care does not mean you have given up hope. It means you are changing what you hope for. You might now hope for good quality of life in the time you have. That can mean more time with family and friends.

All patients have a right to comfort and quality of life throughout their care.

Hospice care most often takes place at home. It can also happen in special inpatient units, in hospitals, and in nursing homes. It can run alongside professional home care if needed.

Services differ depending on where you live and on the hospice's own philosophy. In general they include:

• medical and nursing services
• medical supplies and equipment
• drugs for managing cancer-related symptoms and pain
• short-term inpatient care
• volunteers to give caregivers a break
• counseling and spiritual care
• social work services
• grief counseling and support

Hospice professionals and volunteers are specially trained. They are trained to handle medical symptoms. They are also committed to supporting the emotional needs of patients and families.

The hospice team usually includes doctors, nurses, home health aides, social workers, and clergy or other counselors. It includes trained volunteers too. It may also include speech, physical and occupational therapists if you need them. The team focuses on your goals for end-of-life care. Your care plan is built around your needs and your wishes.

Many people believe hospice is only for the last days or weeks of life. In fact hospice can provide support for months. Many people have said they wished hospice care had begun earlier. They were surprised by the expert care and understanding they got from hospice caregivers.

Your doctor must certify that you are eligible for hospice care. Under Medicare, the certification comes from the hospice doctor and your own regular doctor, if you have one. Both state that you are terminally ill with a life expectancy of 6 months or less. Medicaid and private plans follow broadly similar rules, but the detail differs from plan to plan, so check yours. You would also sign a statement saying you are choosing hospice care. Hospice care can continue if you live longer than 6 months. Your hospice doctor just has to recertify your condition.

You always have the option to stop hospice care. Sometimes patients change their mind. Sometimes they decide to switch to another hospice provider. Sometimes their situation changes in some other way. Two different things get muddled here. If you decide to go back to treatment aimed at curing the illness, you end the hospice benefit yourself; that is your choice to revoke, not the hospice discharging you. Discharge by the hospice is a separate and less common thing, and happens where someone is no longer considered terminally ill or moves out of the service area. Either way you can elect hospice again later if you become eligible.

Some decisions may affect whether you still qualify for hospice services. Getting a second opinion, for example, or joining a clinical trial. If you have questions about that, the hospice team or your insurance provider can answer them. People receiving hospice care often are not eligible for a clinical trial anyway. The reasons include their past medical care, their current physical or mental condition, or whether they can travel to appointments.

Medicare and most Medicaid and private insurance plans pay for hospice services. The Medicare hotline (1-800-MEDICARE) can answer questions about hospice benefits and about Medicare-certified hospice programs. State offices have information about Medicaid coverage. To find out what a private policy covers, ask your hospital business office, a hospice social worker, or your insurance company. Local civic, charitable or religious organizations may also help patients and families with hospice costs.

Once you decide to use hospice care, talk to organizations as soon as you can. Not all hospices provide the same services, and the medicines they cover vary. Talk to family and friends who have used hospice services. Ask your health care team who they would suggest. Organizations such as the National Hospice and Palliative Care Organization have databases that help you find and compare hospices in your area.

Hospice changes who you ring, and this catches families out. A hospice nurse answers the phone at any hour of the day or night. For symptoms the hospice is there to manage, ring the hospice first rather than 911: that is what the American Cancer Society advises, and going straight to an emergency department can also affect the hospice benefit. It is not a rule for every situation. If someone is in immediate danger, or your written hospice plan tells you to, call 911. Put the hospice number on the fridge and in every phone in the house on day one.

• Call the hospice number straight away, at any hour, if pain has broken through and the usual dose is not holding it, breathing has become laboured or frightening, there is new bleeding, or a seizure happens.
• Call the hospice number the same day if the person can no longer swallow their tablets, becomes confused or restless in a way that is new, or has not passed urine all day.
• Call the hospice team within a day or two if the medicines are running low, a caregiver is at the end of their strength, or you want to talk about a short inpatient stay to get symptoms back under control.

Hospice first does not mean hospice only. Call 911 if the hospice team tells you to, if something has happened that hospice does not cover, such as a fall with an obvious injury, or if you cannot reach the hospice nurse and a symptom is out of control. Never sit with severe pain, choking, a seizure that will not stop, or heavy bleeding because you are waiting for a call back.

• American Cancer Society: hospice care
• NCI: care choices