Making Decisions Together
Understanding Your Loved One's Wishes
Palliative Care
Palliative Radiation, Chemotherapy, or Surgery
Hospice Care
What to Expect with Hospice Care
Home Care

"My husband has been fighting cancer for a long time. Now that the cancer is progressing, I'm learning that his needs are changing, and so are mine. We're facing new issues, and it's hard." - Vera

Your loved one may be struggling with advanced cancer or with a cancer recurrence. Doctors may be saying that the cancer is not responding to treatment. You may have been told that long-term remission is not likely. Or your loved one may have decided to discontinue treatment and live out his or her days to the fullest.

This may be a time when new decisions need to be made. Shifts in care may be needed or may already be taking place. The burden of helping make these decisions may seem much heavier than it used to be. These choices often come with many emotions, such as sadness, anger, and the fear of the unknown. They may also come with questions about how much longer he or she will live.

Thinking or talking about these issues may feel like you are giving up. But you aren't. It doesn't mean giving up hope. People usually cope better when they have different options. Having information about how to deal with tough situations will help. Your friend or family member still deserves good medical care and support from the health care team even if the treatment changes.

Making Decisions Together

"I guess some people don't want a lot of information because they feel they can't handle what the possibilities are. But I don't think you can really make a good decision without knowing everything. We had to ask a lot of questions, though, because we didn't know all our options." - Beth

• Treatment goals
• When to use hospice care
• Financial decisions
• How to get support from family members

When dealing with advanced cancer, people have different goals for their care. Some want to keep following more aggressive treatments. Others decide to choose alternative paths for care or let nature take its course. You may wonder: "Have we done everything possible to treat the cancer, or should we try another treatment?" It's natural to want to do all you can, but you should weigh these feelings against the positives and negatives for your loved one.

"You really want to know if the cure is worse than the illness. We've come to ask the question, what's the quality of life after this? Is it worth being sick for 2 months if he's only got 6 months to live?" - Dan

Questions to ask:

• What's the best we can hope for by trying another treatment?
• Is this treatment meant to ease 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 are the possible side effects and other downsides of the treatment? How likely are they?
• Are the possible rewards bigger than the possible drawbacks?

Asking these questions may help the patient decide whether to continue or begin more treatment. It's best to work together on this process. It will help you figure out both of your needs and the needs of others close to you.

It is important to ask your health care team what to expect in the future. And it's important to be clear with them about how much information you and the patient want from them.

Understanding Your Loved One's Wishes

"I think some people, like me, want to know everything. I want no surprises. My husband doesn't want to know anything. We struggle with this issue." - Shirelle

For many families, it is important that your loved one be in charge of making decisions. But in some families and cultures, it's common for the caregiver to make many of the decisions. And they may make them with or without the patient knowing. Or sometimes the patient wants the caregiver to make all the decisions. This may be hard for many reasons:

• Your own stress may make it hard to decide.
• Your ideas about how to move forward may differ from the ideas of others.
• The patient may be less able to take in new facts.
• Other family members' beliefs may differ from the patient's.
• The opinions of your health care team may differ from your loved one's or yours.

There may also come a time when you have to make decisions for your loved one because he can't anymore. It's important to get a sense of how he feels about this before it happens. How would he like to deal with it? This may mean letting go of some opinions that you have about treatment. (For example, you may want to keep your loved one alive, whatever it takes. But he may wish to stop receiving life-sustaining measures at a certain point.) Try to keep things in perspective by looking at the facts.

Palliative Care

All patients have a right to comfort and quality of life throughout their care. This kind of care is often called palliative care. It includes treating or preventing cancer symptoms and 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 they can improve their quality of life with palliative 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. Palliative care can go on through treatment, survival, advanced disease, and the time when treatment no longer controls the cancer. Members of the health care team may be able to help. But a palliative care specialist may be the best person to treat some problems. Ask the doctor or nurse if there is a specialist your loved one can see.

"We have got to let patients and their family members truly understand that if they choose not to do chemo or some other aggressive therapy, there are other options where they will receive support, comfort care, and assistance from the health care team." - Joshua, oncologist

Choices for Care

There are a number of options for your loved one's care. These depend on the type of cancer and the patient's goals for care. These options include:

• Clinical trials (research studies)
• Palliative radiation, chemotherapy, or surgery
• Hospice care
• Home care

Many patients choose more than one option. Your loved one should base her decision on the risks and benefits of available treatments as well as her own feelings about life and death. You should both ask all the questions you need to. If she chooses not to get any more active cancer treatment, it does not necessarily mean a quick decline and death. It also does not mean she will stop receiving palliative care. The health care team can offer information and advice on treatment options.

Clinical Trials

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 trial your loved one may choose will depend on the type of cancer he has. It will also depend on what treatments he has already had. 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 fully explain these before any decisions are made.

Taking part in a clinical trial could help your loved one, and also 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 the health care team to learn more about coverage for clinical trials.

For more information about clinical trials, see NCI's booklet, If You Have Cancer: What You Should Know About Clinical Trials.

Palliative Radiation, Chemotherapy, or Surgery

Some palliative radiation and palliative chemotherapy may help relieve pain and other symptoms. In this way, they may improve a person's quality of life even if they don't slow the 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 and other symptoms. For more information, see the NCI booklets, Chemotherapy and You and Radiation Therapy and You (see inside cover).

Hospice Care

"I can't say enough about our hospice nurse. We don't need her all the time yet, but she's here if we need help. She comes by or calls us to see if there's anything she can do. She's been a great source of comfort." - Gayle

Hospice care is an option if you and your loved one feel there is no longer a benefit from cancer treatments. Choosing hospice care doesn't mean that you've given up. It means that the treatment goals are different now. It does not mean giving up hope, but rather changing what you hope for.

The goal of hospice is to help patients live each day to the fullest by making them comfortable and as symptom free as possible. Hospice doctors, nurses, chaplains, 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.

Many people don't realize that hospice can provide support for more than a few weeks. As a result, many caregivers have said that they didn't look into hospice as early as they could have. Later, they wished they had gotten hospice involved sooner in the care process. 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. Check with the hospice you are thinking of using to learn what treatments and services are covered. Also check with your loved one's insurance company to see what it will cover.

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. Patients will be reviewed periodically to see whether hospice care is still right for them. Services may include:

• Doctor services (The patient may still keep his own doctors, too.)
• Nursing care
• Medical supplies and equipment
• Drugs for managing cancer-related symptoms and pain
• Short-term inpatient care
• Homemaker and home health aide services
• Respite (RES-pit) services to give you a break from caring for your loved one
• Counseling
• Social work services
• Spiritual care
• Bereavement (grief) counseling and support
• Volunteer services

What to Expect with Hospice Care

"I wish I'd found out more about hospice care. But you don't know what you need at the beginning." - Bruce

People can get hospice services at home, in special facilities, in hospitals, and in nursing homes, where there are specialists to help guide care. They also have visits by nursing assistants, social workers, and chaplains, as well as 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 curable problems with brief hospital stays if needed. An example might be pneumonia or a bladder infection.

Medicare, Medicaid, and most private insurance companies 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 the Web site at www.nhpco.org to find a hospice in your community.

Home Care

Home care services may treat the cancer itself, not just the symptoms. This is for people who get treated at home rather than in a hospital. If the patient qualifies for home care services, they may include:

• Managing symptoms
• Monitoring care
• Physical and other therapies
• Providing medical equipment

Your loved one may have to pay for home care services. Check with your insurance company. Medicare, Medicaid, and private insurance companies will sometimes cover home care services when ordered by the doctor. But some rules apply. So talk to a social worker and other members of the health care team to find out more about home care.

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