Making Choices About Care
"There's a part of me that wants to keep fighting and try a clinical trial; the other part wants to stop fighting. I'm just so tired of it all. Yet I can't help wondering if there are other options." - John
People have different goals for care when dealing with advanced cancer. And your goals for care may be changing. Perhaps you had been hoping for a remission. Yet now you need to think more about controlling the spread or growth of the cancer. Your decisions about treatment will be very personal. You will want to seek the help of your loved ones and health care providers. But only you can decide what to do. Your desire to avoid future regrets should be measured against the positives and negatives of treatment.
Questions you may want to ask:
- What's the best we can hope for by trying another treatment? What is the goal?
- Is this treatment plan meant to help side effects, slow the spread of cancer, or both?
- Is there a chance that a new treatment will be found while we try the old one?
- What's the most likely result of trying this treatment?
- What are the possible side effects and other downsides of the treatment? How likely are they?
- Are the possible rewards bigger than the possible drawbacks?
It is important to ask your health care team what to expect in the future. It's also important to be clear with them about how much information you want to receive from them.
You have a right to comfort care both during and after treatment. This kind of care is often called palliative care. It includes treating or preventing cancer symptoms and the side effects caused by treatment. Comfort care can also mean getting help with emotional and spiritual problems during and after cancer treatment. Sometimes patients don't want to tell the doctor about their symptoms. They only want to focus on the cancer. Yet you can improve your quality of life with comfort care.
People once thought of palliative care as a way to comfort those dying of cancer. Doctors now offer this care to all cancer patients, beginning when the cancer is diagnosed. You should receive palliative care through treatment, survival, and advanced disease. Your oncologist may be able to help you. But a palliative care specialist may be the best person to treat some problems. Ask your doctor or nurse if there is a specialist you can go to.
"I know that just because I have stage-4 cancer doesn't mean I'm going to die tomorrow. My friend has lived a long time with her advanced cancer." - Li
You have a number of options for your care. These depend on the type of cancer you have and the goals you have for your care. Your health care team should tell you about any procedures and treatments available, as well as the benefits and risks of those treatments. Options include:
- Clinical trials
- Palliative radiation, chemotherapy, or surgery
- Hospice care
- Home care
Many patients choose more than one option. Ask all the questions you need to.
Try to base your decision on your own feelings about life and death, and the pros and cons of cancer treatment. If you choose not to receive any more active cancer treatment, it does not necessarily mean a quick decline and death. It also does not mean you will stop being given palliative care. Your health care team can offer information and advice on options. You also may want to talk about these options with family members and others who are close to you.
Treatment clinical trials are research studies that try to find better ways to treat cancer. Every day, cancer researchers learn more about treatment options from clinical trials. The different types of clinical trials are:
- Phase 1 trials test how to give a drug, how often it should be given, and what dose is safe. Usually, only a small number of patients take part.
- Phase 2 trials discover how cancer responds to a new drug treatment. More patients take part.
- Phase 3 trials compare an accepted cancer treatment (standard treatment) with a new treatment that researchers hope is better. More treatment centers and patients take part.
If you decide to try a clinical trial, the trial you choose will depend on the type of cancer you have. It will also depend on the treatments you have already received. Each study has rules about who can take part. These rules may include the patient's age, health, and type of cancer. Clinical trials have both benefits and risks. Your doctor and the study doctors should tell you about these before you make any decisions.
Taking part in a clinical trial could help you and help others who get cancer in the future. But insurance and managed care plans do not always cover costs. What they cover varies by plan and by study. Talk with your health care team to learn more about coverage for clinical trials for your type of cancer.
For more information about clinical trials, see NCI's booklet, Taking Part in Cancer Treatment Research Studies. Or talk to the NCI's Cancer Information Service at 1-800-422-6237 (1-800-4-CANCER).
Some palliative chemotherapy and palliative radiation may help relieve pain and other symptoms. In this way, they may improve your quality of life even if they don't stop your cancer. These treatments may be given to remove or shrink a tumor. Or they may be given to slow down a tumor's spread. Palliative surgery is sometimes used to relieve pain or other problems.
Hospice care is an option if you feel you are no longer benefiting from cancer treatments. Choosing hospice care doesn't mean that you've given up. It just means the treatment goals are different at this point. It does not mean giving up hope, but rather changing what you hope for. But be sure to check with the hospice you use to learn what treatments and services are covered. Check with your insurance company also.
The goal of hospice is to help patients live each day to the fullest by making them comfortable and lessen their symptoms. Hospice doctors, nurses, spiritual leaders, social workers, and volunteers are specially trained. They are dedicated to supporting their patients' and families' emotional, social, and spiritual needs as well as dealing with patients' medical symptoms.
People usually qualify for hospice services when their doctor signs a statement that says that patients with their type and stage of disease, on average, aren't likely to survive beyond 6 months. Many people don't realize that they can use hospice services for a number of months, not just a few weeks. In fact, many say they wish they had gotten hospice care much sooner than they did. They were surprised by the expert care and understanding that they got. Often, control of symptoms not only improves quality of life but also helps people live longer. You will be reviewed periodically to see if hospice care is still right for you. Services may include:
- Doctor services (You may still keep your own doctors, too.)
- Nursing care
- Medical supplies and equipment
- Drugs to manage cancer-related symptoms and pain
- Short-term in-patient care
- Homemaker and home health aide services
- Respite (relief) services for caregivers. This means someone else helps with care for awhile, so the caregiver can take a break
- Social work services
- Spiritual care
- Bereavement (grief) counseling and support
- Volunteer services
What to Expect With Hospice CareYou can get hospice services at home, in special facilities, in hospitals, and in nursing homes. They have specialists to help guide care. They also have nurses on call 24 hours a day in case you need advice. And they have many volunteers who help families care for their loved one. Some hospices will give palliative chemotherapy at home as well. Hospice care doesn't seek to treat cancer, but it does treat reversible problems with brief hospital stays if needed. An example might be pneumonia or a bladder infection. Medicare, Medicaid, and most private insurers cover hospice services. For those without coverage and in financial need, many hospices provide care for free. To learn more about hospice care, call the National Hospice and Palliative Care Organization at 1-800-658-8898. Or visit their websitesite at http://www.nhpco.org. The Web site can also help you find a hospice in your community.
Benefits of Hospice and Home CareHospice and home care professionals can help you and your family work through some tough emotional issues. A social worker can offer emotional support, help in planning hospice or home care, and ease the move between types of care. Many people prefer the comfort of their own home, familiar surroundings, and having friends and family members nearby. Getting health care at home gives family members, friends, and neighbors the chance to spend time with you and help with your care.
Home care services are for people who are at home rather than in a hospital. Home care services may include:
- Monitoring care
- Managing symptoms
- Providing medical equipment
- Physical and other therapies
You may have to pay for home care services yourself. Check with your insurance company. Medicare, Medicaid, and private insurance will sometimes cover home care services when ordered by your doctor. But some rules apply. So talk to your social worker and other members of your health care team to find out more.