Palliative care is a specialized field of medical care focusing on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.1
The word “palliative” comes from the Latin word “palliare” which means “to cloak.”2 Palliative care specialists help cloak or suppress/relieve symptoms, even when the cause of the symptom can’t be removed or cured. Another important service of palliative care is advance care planning: helping people think about and plan and communicate how they’d like to be cared for should they not be able to speak for themselves.
Relief from suffering and improvements in quality of life certainly do not need to be reserved for the end of life.
While some patients, and even some healthcare providers, might think of palliative care as end-of-life care, relief from suffering and improvements in quality of life certainly do not need to be reserved for the end of life. Assistance with managing many unpleasant symptoms is available throughout the course of treatment and recovery.
If your healthcare providers do not address symptom management care, consider asking for a referral to a palliative care specialist.
Essential Components of a Palliative Care Service
What you can expect a palliative care consultation to do or provide:3
- Rapport and relationship building with you and your caregivers
- Symptom, distress and functional status management (for example, pain, shortness of breath, fatigue, sleep disturbance, mood, nausea or constipation)
- Explore your understanding and any needed education about your illness and prognosis
- Clarify treatment goals
- Assess and support coping needs (for example, provision of dignity therapy, psychotherapy to relieve psychological and existential distress in patients at the end of life4
- Assist with medical decision making
- Coordinate with other care providers
- Provide referrals to other care providers as needed
Starting Palliative Care Early
Symptoms can arise and impact your quality of life at any stage of your cancer experience.
- Distressing symptoms such as pain, shortness of breath, anxiety or depression may be present at diagnosis or during cancer treatment, including treatment intended to cure.
- Delayed-onset treatment effects may arise after treatment is completed, even if the cancer is in remission.
- Many symptoms may accompany advanced stages of cancer.
No matter if you have early- or late-stage cancer, if these symptoms persist and are not manageable with standard treatments, considering palliative care is appropriate.
Benefits of Palliative Care
The benefits of palliative care are many, including these:
- Enhanced relationships among the healthcare team, patients and family members
- Expert symptom management
- Clarification of treatment goals
- More as described below
Early Symptom Management in Pancreatic Cancer
BCCT Lead Researcher Laura Pole, RN, MSN, OCNS, Palliative Care Consultant, writes:
I interviewed palliative care specialists Tom Smith, MD, and Patrick Coyne, MSN, at the VCU Thomas Palliative Care Service in Richmond, Virginia. They told of an ingenious palliative-care strategy they used in cooperation with one of the regional hospices.
Patients with pancreatic cancer having pain and/or nausea from their cancer were referred to the Thomas Palliative Care Service, who would arrange for a special procedure, called a neurolytic celiac plexus nerve block, to kill a bundle of nerves close to the pancreas. The patient then returned home and was admitted to hospice. The hospice and palliative care teams observed that many of those receiving the procedure not only had relief of nausea and pain, but also seemed to live longer than those who did not have this procedure. This survival benefit has been observed in research as well.5
In patients with advanced pancreatic cancer with whom I provide palliative care consultation, I suggest they discuss with their physician the possibility of preventing their symptoms from becoming severe by proactively having this procedure. I have observed similar benefits when these people have had this procedure.
Evidence shows that intervening early with palliative care results in better symptom control and quality of life and reduces the cost of medical care. In many cases, early palliative care has resulted in longer survival:
- 350 patients with newly diagnosed incurable lung or non-colorectal gastro-intestinal cancer were randomized to receive either early palliative care integrated with oncology care or oncology care alone. The authors concluded: “Patients with newly diagnosed incurable cancer who received early integrated palliative care (PC) showed increased use of active coping strategies, which was associated with improved quality of life (QOL) and depressive symptoms. PC may improve QOL and mood by providing patients with the skills to cope effectively with life-threatening illness.”6
- In patients with metastatic non-small cell lung cancer, a randomized control trial in 2010 integrating early palliative therapy with standard care not only improved their quality of life and mood, but also improved survival compared to receiving standard care alone. Palliative care in this setting led to less aggressive care at the end of life yet extended survival.7
- In a secondary analysis of the 2010 study, researchers found that combining early palliative care with standard care helped to optimize the timing between last IV chemotherapy administration and transition into hospice services. Patients received about the same number of chemotherapy regimens in the study and standard care group, but those receiving early palliative care were less likely to receive IV chemotherapy within 60 days before dying. Reduced use of chemotherapy close to death “produced no detriment to survival, contrary to popular perception that more aggressive care prolongs life in patients with metastatic cancer.”8
- Being seen by a palliative care consultation team within three days of hospital admission can save on the cost of care. In a meta-analysis of six studies, hospital costs were lower for patients seen by a palliative care consultation team than for patients who did not receive this care. The cost savings were greater for those with a primary diagnosis of cancer and those with more illnesses compared with those with a noncancer diagnosis and those with fewer illnesses. Many people with cancer fear that their care will be financially burdensome.The ability to deliver quality care with lower cost, while also reducing the physical and emotional costs of suffering, is likely to be deeply beneficial to patients and their caregivers.9
Clinical Practice Guidelines
The American Society for Clinical Oncology’s guidelines on palliative care state that patients should receive palliative care upon diagnosis and along with active cancer treatment at any stage of the disease.
The American Society for Clinical Oncology’s guidelines on palliative care state that patients should receive palliative care upon diagnosis and along with active cancer treatment at any stage of the disease. The standards particularly emphasize palliative care for those with advanced cancer, but state that patients with early-stage cancer may also benefit.10
The Pancreatic Cancer Action Network strongly recommends that symptom management and supportive (palliative) care be provided early in one’s diagnosis as well as during and after treatment.11
Early Palliative Care Helps Families
In a randomized control trial, researchers assessed people with incurable lung and gastrointestinal cancers as well as their family members, friends or loved ones who were considered the primary caregiver. According to the researchers: “When palliative care was added to standard cancer care shortly after a cancer diagnosis, quality of life was better for family caregivers and they reported fewer symptoms of depression . . . This study suggests that early palliative care creates a powerful positive feedback loop in families facing cancer . . . While patients receive a direct benefit from early palliative care, their caregivers experience a positive downstream effect, which may make it easier for them to care for their loved ones."12
Finding a Palliative Care Service
Talk to Your Doctor
The Center to Advance Palliative Care suggests the following when seeking a palliative care consultation:13
“The first step is to talk to your own doctor. Most of the time, you have to ask your doctor for a palliative care referral to get palliative care services. Whether you are in the hospital or at home, a palliative care team can help you.”
The site provides tips to help you talk to your doctor: Talk to your doctor: how to get palliative care?
Choosing a Palliative Care Service
Finding a quality palliative care service is important. Sometimes palliative care services are linked with hospices, which makes sense, because hospice care is palliative care of people who are nearing the end of life. Resources of frequently asked questions about hospice and palliative care services:
- National Association of Hospice and Palliative Care: Caring Info
- Center to Advance Palliative Care: Questions to Ask During Your Palliative Care Team Meeting
Directories of Palliative Care Providers and Services
- The Center to Advance Palliative Care: Palliative Care Provider Directory
- National Association of Hospice and Palliative Care: Caring Info: Link to national directory to finding a hospice or palliative care provider
- Global Directory of Palliative Care Services and Organizations
- Hospice Foundation of American Hospice Directory: This directory lists state hospice and palliative care associations which often have their own directories of programs in the state.
Written by Laura Pole, RN, MSN, OCNS, and reviewed by Nancy Hepp, MS; last update June 6, 2018.
General Information on Palliative Care
- American Society of Clinical Oncology, CancerNet Patient Information: Caring for the Symptoms of Cancer and Its Treatment May 2018.
- American Society of Clinical Oncology, CancerNet Patient Information: Palliative Care
- Center to Advance Palliative Care: Frequently Asked Questions
- Caring Connections: Palliative Care Resource and Educational Material for Health Care Professionals
Palliative Care and Caregiving
- Center to Advance Palliative Care: Palliative Care for Caregivers.
- NHPCO: CaringInfo: Palliative Care and Caregiving
- Donald I. Abrams, MD, and Andrew T. Weil, MD: Integrative Oncology, 2nd Edition
- Raymond Chang, MD: Beyond the Magic Bullet: The Anti-Cancer Cocktail
- American Society of Clinical Oncology: Cancer.Net