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When Someone You Love Has Advanced Cancer: Support for Caregivers

  • Posted: 01/10/2012

Helping Your Loved One Cope With Advanced Cancer

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 coping with 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 isn't responding to treatment. You may have been told that long-term remission isn't 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 making these decisions together 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 your loved one will live.

Thinking or talking about these issues may feel like you're 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 loved one 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 aren't sure they can 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

You may have been caring for the cancer patient for a short or a long time. Most likely, you'll be very involved in helping make choices about next steps for care. Some of these choices may include:

  • 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 other paths for care. 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 treatment 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 got less than a year 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 or slow the spread of cancer?
  • 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's important to ask your health care team what to expect in the future. And it's also 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. But my husband doesn't want to know anything. We struggle with how to handle this issue." - Dora

For many families, it's 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 other family members and friends.
  • The patient may have different beliefs about care than you or other loved ones.
  • 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. Care that makes patients feel better but doesn't treat the disease itself 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 provide comfort care. 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 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." - Dr. Hauser

Choices for Care

There are a number of options for your loved one's cancer 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. And she will continue to receive palliative care and made comfortable. The health care team can offer information and advice on treatment options.

Clinical Trials

Clinical trials are research studies using people 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 the 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 more information about clinical trials, see NCI's booklet, Taking Part In Cancer Treatment Research Studies.

Palliative Radiation, Chemotherapy, or Surgery

Some palliative radiation, chemotherapy, and surgery, 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. For more information, see the NCI booklets, Chemotherapy and You and Radiation Therapy and You.

Hospice Care

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 the emotional, social, and spiritual needs of both patients and their families, as well as dealing with patients' medical symptoms.

"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." - Gail

Many people believe that hospice is only available in the last days or weeks of life. They don't realize that hospice can provide support for much more than a few weeks. As a result, many caregivers have said that 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 by the health care team to see whether hospice care is still right for them. Services may include:

  • Doctor services
  • 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 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 earlier about hospice care. But you don't know what you need at the beginning. And I didn't realize they could help me sooner rather than later." - Bruce

People can get hospice services at home, in special facilities, in hospitals, and in nursing homes. Hospice care also provides 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 hospice services 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. Examples 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 program in your community.

Home Care

Home care services not only provide palliative care, but may treat the cancer itself. This is for people who get medical care 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.

No One Knows the Future

It's normal for people to want to know how long their loved one will have to live. It's also natural to want to prepare for what lies ahead. You may want to prepare emotionally too, as well as make certain arrangements and plans.

But predicting how long someone will live is difficult. The doctor has to take into account the type of cancer, treatment, past illnesses, and other factors. Your loved one's doctor may be able to give you an estimate. But keep in mind that it's a guess. Every patient is different.

Some patients live long past the time the doctor first predicted. Others live a shorter time. Also, an infection or other complication could happen and change things. Your loved one's doctor may know the situation best. But even the doctor can't know the answer for sure. And doctors don't always feel comfortable trying to predict how long someone will live.

In truth, none of us knows when we are going to die. Unexpected events happen every day. The best we can do is try to live fully and for today.