The Sol Goldman Pancreatic Cancer Research Center

Quality of Life


Quality of life is the concept that how a person feels is often related to how comfortable, or uncomfortable, they are physically, emotionally, socially, and/or spiritually. These are all areas that your cancer team, with the help of other resources, can help with. Living the highest quality life for as long as possible is usually everyone's goal.

Managing various quality of life issues

Symptoms and Physical Issues
One of the most important things is managing physical symptoms. These can seriously interfere with quality of life, both for the person with cancer and for their loved ones. Pain is a common physical symptom, and it is very important to remember that pain can be managed with medications and other treatments such as nerve blocks (see the pain section of this app). Because pancreatic cancer affects the gastrointestinal (GI) system, pancreatic cancer often causes other physical problems such as nausea, vomiting, diarrhea and/or constipation.

Diet
Not wanting to eat is common in most serious illnesses. Sometimes people can better tolerate smaller meals or richer foods like ice cream or nutritional drinks, than their previous diet. Their bodies are telling them how much food they can handle, so it usually isn't good to put too much pressure on them to eat if they don't want to. Dieticians specializing in cancer care are available at many centers.

Final Stages
Symptoms like loss of appetite, extreme fatigue and the abdominal swelling called "ascites" can be signs that pancreatic cancer is moving into the final stage. Many patients also lose energy and end up sleeping more. This is also natural but can be addressed if the person is finding the fatigue overwhelming. Finally, the ascites can be reduced through a procedure called "paracentesis" where a needle is inserted into the abdomen and fluid slowly drawn out. However, the fluid will come back, so this procedure can only be done every week or two.

Emotional Issues
Let your cancer team know if you're having any physical issues since effective treatments are often available. If you or someone you love is having these symptoms, talk to the cancer team to see what they think. In some instances, this may be the time to consider hospice care, which can make the person and their family more comfortable.

Social Concern
Sometimes people struggle with changes to their social situation or roles. They may have been very independent or taking care of others and now find that they need help themselves. People with cancer are often more concerned about their loved ones than they are about themselves. Financial issues can also be a concern. Let your cancer team know if these things are bothering you as they may have resources to help you with them.

Spiritual Concern
Serious illness like pancreatic cancer can also cause people to ask questions about why this has happened to them or to try to find the meaning in such a situation. Many who are religious find their faith is an important way to cope with illness. They may find comfort in spiritual practices or talking with a spiritual leader. Even if someone is not religious, talking to someone about these important concerns can help. A medical chaplain or counselor on the cancer team can help address these important questions. Your cancer team should be able to connect you with someone to talk with if you don't know anyone on your own.

Palliative Care

If you or someone you care about is dealing with pancreatic cancer, you should know about an important type of service. It's called palliative care and is specialized medical care for people with serious illness. The goal of palliative care is to improve quality of life, both for the person and their family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with the patient's other medical providers to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness and can be provided together with curative treatment. As a result, palliative care is becoming an integral part of cancer care. Evidence shows palliative care can help people better tolerate their cancer treatment. Some patients even live longer and with a better quality of life. www.getpalliativecare.org is a website about palliative care for the public. It has information about palliative care in general and also specific to your location.

Things to take care of

Although people dealing with pancreatic cancer usually hope for the best (we sincerely believe that there is always hope!), it is always a good idea to also plan for the worst. The following are things that should be considered for anyone with a serious illness. Completing them provides peace of mind for both the person with cancer and those who love and care for them.

Naming someone to make healthcare decisions for you
It is important to think of who could make decisions for you if you should become too ill to make them for yourself. This decision maker can be anyone you trust and should be someone who knows you, your values, and what your wishes are for medical treatments. Talking about such things can be difficult, but people usually say the peace of mind afterwards is worth it. There are documents to confirm these decisions, called "Advance Directives." Each state has its own format for Advance Directives. Not all require a lawyer, but most need to be completed in front of witnesses. There is a very helpful format called "The 5-Wishes" which is recognized in 42 states and useful in all 50: www.agingwithdignity.org/five-wishes.php

A Living Will
This is a document that talks about what kind of care you would want should your cancer move into its last or terminal stage. Families often say that knowing such wishes for care in advance is a gift to them. It helps them make appropriate decisions should they ever have to, which can ease the burden of such difficult situations. Your cancer team can help you access the Living Will format recognized in your state, but there are also very helpful websites that can walk you through this process, such as www.prepareforyourcare.org

Treatment Goals
While most people with pancreatic cancer will want to be treated for their cancer sometimes treatments can have side effects that can be worse than the cancer. If you are having significant complications with your cancer treatment, you may want to consider talking with someone. It is important to talk to your cancer team about your treatment goals. For example if a cure is not possible, some patients consider alternate treatments that are more focused on comfort. Doctors understand that people sometimes need to change their treatment goals and should help you make those decisions with clear information about prognosis, side effects, and what alternate options are.

Hospice

This is a form of care for those in the last months of life that focuses entirely on maintaining as much quality of life as possible. Hospice is covered by Medicare and most insurance plans. Hospice can be provided at home, in the hospital, or in a facility like a nursing home. A team of a nurse, physician, social worker, chaplain, aides, and volunteers works with each person and their family to determine the best services for each patient. www.hospicenet.org is a website full of information on hospice and what services are available in your area.

Many people are upset when someone suggests hospice as it sounds like "giving up." On the contrary, evidence now shows that patients with pancreatic cancer who get hospice care sometimes live longer than those who don't receive hospice care. Some hospices provide a wider range of services that may include things like chemotherapy, transfusions, artificial nutrition, so it's good to talk to your cancer team and to hospices in your community to see which one