What End of Life Looks Like With Pancreatic Cancer0 USER TIPS ADD YOUR TIP
Pancreatic cancer is a serious illness that in many cases will be incurable. Unfortunately there are no early warning signs of the disease that allow individuals and their doctors to catch tumors in early stages when treatments might be more effective, explains Walter Park, MD, a gastroenterologist and pancreas specialist at Stanford Health Care.
Survival rates vary depending on the stage at which a pancreatic tumor is diagnosed, the type of pancreatic tumor it is, and the individual. According to NCI data, however, only 8.5 percent of people with the disease survive five years or longer after being diagnosed.
What is important for people with pancreatic cancer to know, though, is that end of life with pancreatic cancer need not be painful—and by working with their cancer care team and clearly expressing their wishes, many can live their final days at home surrounded by loved ones, Park says.
If it becomes clear to the medical team that chemotherapy or other treatments are no longer working, your doctors will discuss shifting to hospice care and end-of-life care options that focus on keeping you comfortable rather than curing your disease. At this point your palliative care or hospice team can help with anti-nausea medications, treatments for pain, and other treatment aimed at making sure you are as comfortable as possible up until death, Park adds. “The goal is to help patients stay as pain-free as possible.”
Here is some more information about what to expect during end of life with pancreatic cancer and how to plan for it.
End-of-life symptoms with pancreatic cancer
End-of-life symptoms will vary from person to person, depending on the type of pancreatic cancer, the effects of treatment, the person’s health status, and more. But for anyone with cancer, the disease weakens the body overall, as well as the immune system.
Symptoms someone might experience toward the end of life with pancreatic cancer include:
- Weight loss
- Muscle atrophy (when muscles waste away)
- Shortness of breath or trouble breathing
- Loss of appetite
- Excess fluid in the abdomen (making the stomach feel tight and/or uncomfortable), also known as ascites
- Worsening weakness or exhaustion
- A need to sleep much of the time or spending most of the day in bed
- Difficulty eating or decreasing appetite
- Decreased ability to talk and concentrate
- Little interest in doing things that would otherwise be important to someone
- Limiting time spent with visitors
- Losing interest in the outside world and news
Additionally the following signs and symptoms may signal an individual with cancer is in the last days of life, according to the American Society of Clinical Oncology:
- Breathing slows and there are long pauses between breath
- Breathing is noisy with congestion, rattling, or gurgling sounds
- Cool skin that turns a blue or dusky color, particularly in the hands and feet
- Dryness of mouth and lips
- Decreased urination
- Loss of bladder and bowel control
- Confusion about time, place, and people
- Drifting in and out of consciousness
How people with pancreatic cancer die
As pancreatic cancer weakens the body and the immune system, complications can occur, such as infections, blood clots, or failure of one or multiple organs, which is typically the ultimate reason people with the disease die, Park explains. Specific complications that are common causes of death in people with pancreatic cancer include:
- Blockage or infection of the bile ducts (the tubes that carry bile from the liver and gallbladder to the small intestine to help you digest food)
- Bowel obstruction, in which some kind of blockage prevents food and gas from passing through and cuts off blood supply to the bowel. This can cause death of part of the bowel and/or serious infection.
- Liver failure
- Deep vein thrombosis in the extremities (a serious blood clot that can travel to the lungs and block blood flow there)
- Pneumonia or other infections
Such complications may sound intimidating, but the palliative care and hospice care workers will monitor your health through your final days and help treat and minimize any pain or discomfort such complications may cause. “We want to make sure you don’t feel it,” adds Park.
Planning for end of life if you have pancreatic cancer
Preparing and planning for end-of-life starts with discussing your wishes with your loved ones. Palliative care team members, social workers, psychologists, clergy, and other members of your care team can also help inform you about what decisions should be made ahead of time and what steps to take.
It’s important to have a discussion with your loved ones about who you wish to designate as your health care proxy (who may also be called medical power of attorney, health care agent, surrogate, or proxy) to make medical decisions for you if at some point you are unable to, and what decisions about your care you want them to make. The legal documents used that allow you to explicitly state these wishes are called advance directives.
Some questions that can be helpful to discuss with your loved ones to prepare for end of life include:
- Where will I feel most comfortable during my final days and weeks? Where do I want to receive end-of-life care?
- Would I prefer to die at home or somewhere else?
- In addition to the clinicians caring for me, who do I want to be my primary caregiver? Will it be my spouse, partner, another friend, or another relative?
- Who do I want to help with my daily needs (such as using the bathroom or showering) if I need help?
- Do I want my caregivers to try to provide CPR if my heart or breathing stops?
- Would I want to go on life support to keep me alive?
These conversations can be difficult to have, but the earlier you bring them up, the more time you’ll have to think about your wishes, and talk them through with your loved ones, to ensure you have the ending you want. If you have a loved one who has been diagnosed with pancreatic cancer, you may be reluctant to ask them about their end-of-life wishes. But it’s essential to start having these conversations, a little at a time—and listen to what they say, even if you disagree.