Choices for Care When Treatment May Not Be an Option
When dealing with advanced cancer, people have different goals for their care. These goals may change over time. Some patients want to keep trying aggressive treatments or clinical trials. Others choose options such as palliative care or hospice care, which help control the symptoms and side effects of the disease.
Decisions for care are very personal and it's natural to want to do all you can. But you should weigh these feelings against the risks and benefits of available treatments as well as your own feelings about life and death. You should ask all the questions you need to. If you choose not to go through active cancer treatment, you will continue to receive care and be made comfortable.
Palliative care is care that makes patients feel better but doesn't treat the disease itself. Palliative care should begin when the cancer is diagnosed. It continues through treatment and beyond. Research shows that palliative care improves the quality of life of patients and family members. All patients have a right to comfort and quality of life throughout their care.
Palliative care is especially important if you choose to stop treating your cancer. It includes:
- Treating or preventing the symptoms and side effects caused by cancer treatment
- Getting help with emotional and spiritual problems
- Addressing the practical concerns of patients and families
Palliative treatment: Many of the same methods that are used to treat cancer, such as medicines and certain treatments, can also be used to reduce pain or other symptoms, and help a patient feel more comfortable. In advanced cancer, palliative treatment may be given to help a person feel better, even if it isn't intended to treat the cancer. For example, doctors may give chemotherapy to slow the growth of a tumor that is causing pain. Or surgery may be performed to remove a mass that is pressing on certain nerves and causing pain.
To receive palliative care, members of your health care team may be able to help. However a palliative care specialist may be the best person to treat problems. Ask your doctor or nurse if there is a specialist you can see.
For more about palliative care, see the NCI fact sheet Palliative Care.
Hospice is a special type of care in which medical, psychological, and spiritual support are given to patients and their loved ones when cancer therapies are no longer controlling the disease. Although both hospice and palliative care provide comfort and support for patients, palliative care is available throughout a patient’s experience with cancer. A person’s cancer treatment continues while one is receiving palliative care, but with hospice care, the focus has shifted to just relieving symptoms and providing support at the end of life.
Hospice care is a focus on caring, not curing. The goal of hospice care is to help you live each day to the fullest by controlling pain and other symptoms, making you as comfortable as possible. It is not intended to either hasten or postpone death. If your condition improves or your cancer goes into remission, hospice care can stop and active treatment can resume.
Choosing hospice care doesn't mean that you've given up hope. Instead, hospice care means you’re changing what you hope for. This could be hoping for good quality of remaining life, including more time with loved ones and friends.
Hospice care can be given in different places. Hospice care most often takes place at home, but it can also be provided in special inpatient facilities, hospitals, and nursing homes. It can also take place along with professional home care if necessary. Hospice services may include:
- Doctor 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 committed to supporting the emotional needs of both patients and their families, and are trained to deal with medical symptoms. The hospice team usually includes doctors, nurses, home health aides, social workers, clergy or other counselors, and trained volunteers. The team may also include speech, physical, and occupational therapists, if needed. The hospice team will focus on your goals for end-of-life care, basing your care plan on your needs and desires.
Hospice can provide support for months. Even though many people believe that hospice is only available in the last days or weeks of life, it can provide support for months. Many people have said that they wished hospice care had begun earlier. They were surprised by the expert care and understanding that they got from hospice caregivers.
Your doctor must certify that you are eligible for hospice care. Most insurance plans, including Medicare, will cover hospice care once they receive a statement by both your attending doctor and the hospice medical director that states you have a life expectancy of 6 months or less. You would also sign a statement saying that you’re choosing hospice care. Hospice care can be continued if you live longer than 6 months, as long as your hospice doctor (and regular doctor if you still have one) recertifies your condition.
The hospice team or insurance provider can answer questions about whether certain care decisions, such as getting a second opinion or taking part in a clinical trial while in hospice care, would affect eligibility for hospice services.
Medicare and most Medicaid and private insurance plans pay for hospice services. Medicare is a government health insurance program for the elderly and disabled that is overseen by the Centers for Medicare & Medicaid Services (CMS). For information:
- The Medicare hotline can answer your questions about hospice benefits and Medicare-certified hospice programs. Call 1–800–MEDICARE (1–800–633–4227); callers with TTY equipment can call 1–877–486–2048.
- The Medicare website has other tips and resources about coverage for hospice, including the booklet Medicare Hospice Benefits.
Medicaid, a federal–state partnership program that is part of CMS and is administered by each state, is designed for people who need financial help for medical expenses. Information about coverage is available from local state welfare offices, state public health departments, state social services agencies, or the state Medicaid office. Information about specific state locations can be found online.
Information about the types of costs covered by private health policies is available from your hospital business office or hospice social worker, or from your insurance company.
Local civic, charitable, or religious organizations may also be able to help patients and their families with hospice expenses.
Once you decide to use hospice care, talk to organizations as soon as you can. Choosing a hospice will depend on what services are in your area. It will also depend on which one appeals to you. Talk to family and friends who have used hospice services. Ask your health care team who they would suggest. The Hospice Foundation of America has a How to Choose a Hospice Provider page with a list of questions to ask which may be helpful.
The following organizations can provide more information about hospice.
The National Hospice and Palliative Care Organization’s Caring Connections website offers information and publications focused on improving end-of-life care for adults and children. The site includes a database of national hospice programs. Some Spanish-language publications are available.
National Association for Home Care & Hospice
The National Association for Home Care & Hospice has a home care and hospice agency locator in its information for consumers.
Patients with advanced cancer may be offered the option to participate in early-phase clinical trials. These trials are designed to look at the safety of a new treatment and to identify the best dose.
The chance that the new treatment will benefit a patient in such a trial is low, but some patients join these trials because they have hope that the treatment may help slow the growth of their cancer. Another reason may be that they want to benefit future patients by taking part in a trial.
If you decide to try a clinical trial, you will have to know details about your type of cancer and past treatments. Each study has rules about who can take part. For example, only patients in a certain age group or who have a certain genetic change in their tumor may be able to join.
Clinical trials have both benefits and risks. And keep in mind that the costs vary with each study. Your doctor and the study doctors should fully explain these issues before you decide to join a trial.
To learn more about clinical trials, see Learn About Clinical Trials.
To find a trial that you might be eligible for, see Find a Clinical Trial.