Since your diagnosis, you’ve been tested and treated to control the cancer in your body. When something worked, you stuck with it. If it stopped working, you and your health care team reviewed the options and perhaps tried a different treatment.
The outcome of cancer is highly variable. Some people are cured of their cancer, and others are able to live for years with treatment. But if cancer treatments stop working, you may be facing mortality or the end of life.
When you reach the end-of-life stage of cancer, there may be no more methods available to control your cancer -- or you are ready to stop all the testing and treatment.
Your care, however, continues. The focus shifts from trying to stop the cancer to focusing on helping you live as well and as comfortably as possible for the rest of your life.
Physical Changes
You may not feel or notice any changes for a while. Most people with cancer do well physically for a long time and then gradually lose their ability to function as they near the end of life.
Cancer slowly shuts down your organs. This affects you in many ways:
Fatigue. You will likely feel very tired. Fatigue is one of the most common symptoms at the end-of-life phase. Even when you lie still, cancer saps the energy from your body. Expect to feel drowsy and weaker day by day.
Appetite loss. Cancer causes your body to stop using food and water properly. It doesn’t help you gain weight or give you the nutrition and energy it has all your life. If you want to eat and drink, it’s a sign that your body still wants to do something with it. But there may come a point when your body tells you it doesn’t want food or liquid.
This can be hard for loved ones to understand. In many cultures, one way we show love and care is through food. Loved ones may be concerned, and you may worry that you’re disappointing them because you don’t want to eat. It helps when everyone understands that loss of appetite is part of the process at this stage.
Confusion and delirium. There are many reasons you may feel confused or delirious. Your brain may not be getting enough of the blood flow, oxygen and nutrition it needs to feel alert. Confusion may also be a side effect of medication, or an imbalance brought on when you stop taking a certain medication. Though some confusion is normal, your health care team may be able to offset with fluids or adjusting your doses.
Pain. As in other stages, pain from cancer may happen when cancer takes over tissue, or when tumors press on your bones, nerves, or organs. Some tumors release chemicals that cause pain, or cause your body to react in pain. Your health care team can manage the pain through medicine.
Pain management is a key part of palliative care, including hospice care. Be sure to let your loved ones and medical team know how you are feeling. The pain can often be eased.
Trouble swallowing. You may feel too weak to swallow. It’s also possible that “swallow” messages from your brain aren’t reaching your esophagus, the part of your body that connects your mouth to your stomach.
If you can’t swallow pain medicine, it can also be effective when placed under your tongue or through injection, infusion, or skin patch.
What to Expect Emotionally
This can be a time of big emotions -- for you and your loved ones. You may feel peaceful and ready to go. You may feel sad, angry, scared, or withdrawn. You may be worried about the loved ones you’ll leave behind or have feelings -- good or bad -- about your life.
The only right emotion to feel is whatever you’re feeling.
Expect to grieve losses on many levels over the course of this stage: loss of function, independence, hope of recovery, and the way you thought your life would look.
Keep in mind that you have options, including hospice, which can help you address any emotional, relational, and spiritual issues that are on your mind.
How Hospice Helps
Hospice is both a philosophy and a method of care. The philosophy is that you have the best quality of life possible in your final phase of life. As a method of care, hospice is a team of professionals -- physician, nurse, social worker, home-health aide, and spiritual advisor -- who support your physical, spiritual, and emotional needs.
This includes:
- Medication for your symptoms and pain
- Medical equipment and supplies
- Physical therapy
- Occupational therapy
- Speech and language therapy
- Nutritional counseling
- Making decisions about end-of-life measures like feeding tubes, CPR, and intubation
- Legacy planning
Hospice is also there to support your family through the process, and for a year or more after your death.
More than 80% of the time, hospice care happens at home. If that’s not an option, you can choose to do hospice in a facility or hospital. In addition to Medicare, almost every private insurance company covers hospice.
Hospice can support you over the last 6 months of your life. This, of course, isn’t a hard-and-fast rule. There’s always the option to recertify for more time, as long as your doctor can reasonably say you have 6 months or less to live (assuming the disease takes its natural course). You can also leave hospice and go back to it later.
The average length of a hospice stay is 18 days, but many people who’ve lost loved ones to cancer say they wish they’d started it sooner.
You may have heard of end-of-life doulas, or “death doulas,” people who help keep you or your family company, or make arrangements after the death. They complement hospice care and may not have the same background or training. You may want to discuss with your doctor and hospice care team what support you’d like to get and who can best provide that care.
Advance directives for health care, which are legal documents stating what types of medical interventions you do or don’t want, and who can make those decisions for you if you’re not able to do so yourself, are also important. These directives include living wills, durable power of attorney for health care/medical power of attorney, POLST (Physician Orders for Life-Sustaining Treatment), and do not resuscitate orders (DNRs).
Several states (California, Colorado, Hawaii, Maine, New Jersey, Oregon, Vermont, and Washington) and Washington, DC, have passed “death with dignity” acts that allow for physician-assisted death for people who are mentally competent and have 6 months or less of life expectancy. These laws include having two physicians confirm the patient’s diagnosis, residency in the area, and ability to decide about what they want -- with waiting periods built into the process.
Your Final Days
Though everyone is different, there are common physical signs that your body is preparing to die.
These include:
- Loss of bladder or bowel control
- Change in breathing patterns
- Rattling or gurgling sounds caused by the saliva and other fluids in your throat and airways
- Skin that looks blue and/or feels cold
Even at this point, there are resources to help you feel as comfortable as possible. Your health care team can use disposable pads and keep your clothing and bedding clean. They can adjust pillows, use a humidifier, or give you oxygen. As your blood flow slows down, they can keep you warm with blankets.
Be gentle with yourself. No one knows what they’ll feel until they’re in this part of their experience, and it’s different for everyone. As long as you’re able, you should always feel empowered to ask for what you need to feel comfortable and to have help if you can’t speak for yourself.
