Choices for Care When Treatment May Not Be an Option
When dealing with advanced cancer that can no longer be treated (also called terminal or end-stage), people have different goals for their care. These goals may change over time. Some people want to look for 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 when cancer is terminal 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 more active cancer treatment, you can continue to receive supportive care in order to keep you as comfortable as possible.
Clinical Trials for Advanced Cancer
People with end-stage cancer may be offered the option to take part in early-phase clinical trials. These trials are designed to look at the safety of a new treatment and to identify the best dose.
If a person is found eligible for a trial, the chance that the new treatment will benefit a patient in such a trial is low. However, 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. If a person has been admitted to hospice care, it's rare that they would be eligible to take part in a trial.
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 Clinical Trials Information for Patients and Caregivers.
To find a trial that you might be eligible for, see Find NCI-Supported Clinical Trials.
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 emotional and spiritual support
- 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 cure the cancer. For example, doctors may give chemotherapy or radiation therapy 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, sometimes 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 Palliative Care in Cancer.
Hospice Care for Cancer Patients
Hospice is a special type of care in which medical, psychological, and spiritual support are given to cancer patients and their loved ones when therapies are no longer controlling the disease. With hospice care, a team of health care professionals work with patients and families to provide the comfort and care they need closer to the end of life.
Hospice care is not the same as palliative care. 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 shifts 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.
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 will differ depending on where you live and the philosophy of the hospice itself, but generally includes:
- 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 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 unfortunately 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 recertifies your condition.
You always have the option to stop hospice care if you choose. Sometimes patients change their mind, decide to switch to another hospice provider, or their situation changes in some other way. Less common, but not unheard of, patients may be discharged from hospice if their condition improves, or if they resume cancer treatment.
Joining a clinical trial. 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. Often people receiving hospice care aren't eligible for a clinical trial for a number of reasons. These may include their past medical care, their current physical or mental condition, or their ability to travel to appointments, just to name a few.
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, 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.
Choosing a hospice. 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. Not all hospices provide the same services. 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.
There are also organizations that can help you find a hospice. Examples are:
- The National Hospice and Palliative Care Organization (NHPCO) has the Find a Care Provider database which you can search by name or place.
- NHPCO's CaringInfo website offers information and publications focused on improving end-of-life care for adults and children, including Choosing a Hospice. Some Spanish-language publications are available.
- CMS has a tool to help you find and compare services in your area. Simply enter your zip code and the type of care you need.
- The Hospice Foundation of America has a How to Choose a Hospice Provider page with a list of helpful questions to ask.
- The National Association of Home Care & Hospice has a home care and hospice agency locator.
For more information about hospice, see the home page for the NHPCO. They can also be reached at 1-800-658-8898 (helpline) or 1-877-658-8896 (multilingual line).
Talking to Your Doctor About Your Options for Care
When you have a terminal cancer diagnosis, your doctor and other members of your health care team need to know what you want to know. Many people have a team of health care providers who work together to help them. It's important to sit down with them and talk things out together, so you can decide what is best for you.
Ask all the questions you need to in order to make the right decisions for yourself. This team wants to know your goals for care at this stage of your cancer and how you would like to move forward. Tell them what is most important to you now. For example, is it:
- controlling symptoms and feeling comfortable?
- receiving care at home?
- being open to experimental treatments?
- setting a date to attend a special event?
Their answers will help you know what to expect both now and in the future. For examples, see the questions in the section below.
It's important to have good communication and an understanding of your goals with those who will be caring for you. Here are some topics you may want to discuss with your doctor or other members of your health care team:
- Who will make the decisions about your cancer care. Some people want to know all the details about their care. Others prefer to know as little as possible. Some patients want to make all the decisions, while others want family members to make most of their decisions. What would you prefer?
- What information you want to know about the stage of your cancer. Decide what you want to know, how much you want to know, and when you’ve heard enough. Choose the amount of information that is most comfortable for you. Let your doctor and family members know what that is and ask that they follow your wishes.
- Your pain control options. Some people assume that there will always be severe pain with advanced cancer. This does not have to be the case. Pain can be managed throughout the course of the disease. People whose pain is managed are able to focus on enjoying life. They can sleep better, enjoy friends and family, and focus on the daily activities they enjoy. It’s important to be honest and open about your pain. Tell your doctors if and where you have pain. To learn more about pain control, see Cancer Pain Control.
- What your family wants to know about your cancer. Some family members may have trouble coping with your cancer prognosis. This is even more true when it is metastatic or terminal. They may not want to know how far the disease has advanced or how much time doctors think you have. If you feel comfortable, ask your family members how much they want to know about your condition. Then let your health care team know their wishes. Do this as soon as possible. It will help avoid conflicts or distress among your loved ones. If you haven't done so already, it is important to fill out advance directives.
Knowing How Long to Live with Advanced Cancer
It's normal for people to want to know how long they will have to live. It's also natural to want to prepare for what lies ahead.
But no one knows the future. Predicting how long someone will live is difficult. Your doctor has to take into account the type of cancer, treatment, past illnesses, and other factors. Your 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. 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 to try and live fully and for today.
Questions To Ask Your Doctor about End-Stage Cancer and Hospice Care
Deciding what to do next when cancer is terminal is very personal. Think about what’s most important to you and your feelings about life and death. Discussing the questions on this list may help you talk with your doctor and think through your choices.
- What information do I need that will help me decide my next steps for care?
- When should I think about having hospice care?
- How can I make sure I have the best quality of life possible – that I am comfortable and free of pain?
- Can I have hospice care in my home, or do I have to go to a facility?
- How can I get help with financial matters such as paying for hospital bills or hospice care?
- Who can help me prepare a will or fill out advance directives?
- How can I get help with my spiritual or religious needs?
- Who can help my family and me prepare for the next steps?