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The hospice staff will work with the patient, the primary doctor, and the caregiver to develop a care plan that addresses specific symptoms. This plan will be adjusted as the patient’s condition changes with the entire hospice team monitoring and responding to these modifications at all times.
Medical equipment, such as an adjustable hospital bed, may be arranged by hospice for use at home to keep the patient more comfortable and make caregiving easier. Hospice also provides necessary medical supplies such as bandages, gloves, syringes and catheters as needed.
Patients experience many different symptoms as the pancreatic cancer progresses, a lot of time and energy will be spent trying to manage symptoms as they change. The hospice staff will tell the caregiver what changes or symptoms to watch for. Different medications, often given around the clock, are used to relieve these symptoms. Sometimes treating one symptom can cause others to appear. The caregiver will need to observe and discuss changes with the hospice staff while working to relieve any physical discomfort the patient may experience.
All difficult symptoms can be either alleviated or relieved completely. Be sure to ask your hospice team for help.
Managing Pain
Some people experience little or no pain at the end of life. For others, pain may be constant and intense. It is rare to experience pain that cannot be relieved in any way. Hospice physicians and nurses are experts in using the most advanced pain control methods available.
Pain medications are generally taken by mouth, usually on an around-the-clock basis, to control pain and prevent new pain from appearing. If swallowing becomes difficult, pain medicines may be given in various other ways including in small amounts of concentrated medicine under the tongue or inside the cheek, by suppository, by skin patch, through intravenous (IV) injection, or through a feeding tube (if there is one). The nurse will show the primary caregiver how to administer medications using some of these options.
Surgical procedures that do not involve removing the tumor may be performed to alleviate, or palliate, pain and other symptoms. Jaundice, pain, nausea and vomiting can all be caused by blockage of the bile duct and/or stomach. The main palliative procedures used to treat these symptoms in pancreatic cancer patients are biliary bypass surgery, gastric bypass surgery, and stent insertion.
A celiac plexus block is a surgical procedure that can be used to manage abdominal pain in pancreatic cancer. If the tumor presses on the spine or the nerve bundle in the upper abdomen (celiac plexus), the patient may experience pain. A celiac plexus block can prevent the nerves from sending pain messages to the brain.
Breathing and relaxation exercises may also be used to treat pain when appropriate. The increased oxygen in the lungs and blood helps reduce the stress and anxiety often associated with pain.
Different pains need different treatments, so hospice staff will ask many questions about what the pain is like and what makes it better or worse. In order for the patient to get needed help with pain, he or she needs to tell the hospice staff and other caregivers when pain is present.
The nurse will tell the patient and caregiver what they need to track and discuss with the hospice staff. Use a notebook to write down and describe in detail such things as symptom changes, including different levels of pain, new symptoms, responses to treatments and other changes as instructed by hospice staff.
For more information about pain and symptom management, contact a PanCAN Patient Services Case Manager and request a copy of the Pancreatic Cancer Action Network’s educational booklet, Palliative Care: Quality of Life and Practical Care in Pancreatic Cancer.
Personal Care
The primary caregiver will provide most of the personal care with the support of home health aides who may visit the home one to three times per week, depending on the need.
Personal care involves assisting the patient with all activities of daily living including eating, dressing, bathing, grooming, using the toilet, and other needs as the cancer progresses. It is likely that the patient will eventually be unable to move without assistance. Caregivers will need to help the patient change positions in bed or move around the room. It is important for caregivers to protect their own health at all times. If any of these tasks are too physically demanding, caregivers should ask for help.
If possible, the patient should choose the people to perform different tasks based on who he or she is comfortable with. Also, family members and friends need to determine who feels comfortable performing these tasks.
Providing personal care is often the most physically and emotionally challenging aspect of caregiving. However, for some families it is satisfying and rewarding. For those who are not comfortable providing this care or need extra help, hiring private home health aides can help. Insurance companies that provide a hospice benefit may cover home health aide visits a few days a week as needed, but additional hours, if needed, may not be paid for by insurance.
Role of the Primary Doctor
The doctor who has been providing most of the patient’s care (oncologist or family doctor) will discuss with the hospice staff the patient’s current condition and symptoms, as well as the history and course of the pancreatic cancer.
Some doctors think they can no longer be of service once the patient enters hospice. However, studies have shown that end-of-life care is improved when the primary doctor remains in charge of the patient’s care. Usually, the hospice team will keep the primary doctor informed about the patient’s condition on a regular basis. The primary doctor will work with the hospice doctor or medical director to help oversee the hospice team and the patient’s overall end-of-life care
Cancer-Fighting Treatment during Hospice Care
In most cases, cure-focused treatment does not continue once hospice care begins because the goal of hospice care is to provide comfort during the final weeks or months of advanced illness. Most insurance providers do not pay for cancer-fighting treatment once hospice care begins. However, some will pay for cancer-fighting treatment if the goal of the treatment is to decrease symptoms and increase quality of life rather than to cure the cancer.
Be sure to find out exactly what the hospices in your community can provide and the goal of any treatment.
We’re Here to Help
For more information on hospice or for free, in-depth and personalized resources and information on pancreatic cancer, contact a PanCAN Patient Services Case Manager.
Information provided by the Pancreatic Cancer Action Network, Inc. (“PanCAN”) is not a substitute for medical advice, diagnosis, treatment or other health care services. PanCAN may provide information to you about physicians, products, services, clinical trials or treatments related to pancreatic cancer, but PanCAN does not recommend nor endorse any particular health care resource. In addition, please note any personal information you provide to PanCAN’s staff during telephone and/or email communications may be stored and used to help PanCAN achieve its mission of assisting patients with, and finding cures and treatments for, pancreatic cancer. Stored constituent information may be used to inform PanCAN programs and activities. Information also may be provided in aggregate or limited formats to third parties to guide future pancreatic cancer research and education efforts. PanCAN will not provide personal directly identifying information (such as your name or contact information) to such third parties without your prior written consent unless required or permitted by law to do so. For more information on how we may use your information, you can find our privacy policy on our website at https://www.pancan.org/privacy/.
