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
Relief from suffering and improvements in quality of life certainly do not need to be reserved for the end of life.
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.
BCCT advisor, hospice and palliative care physician and author BJ Miller, MD, explains coming to terms with a new reality in the context of palliative care in a post-COVID-19 society.
Jasmine Hudnall, DO, discusses three studies on prognosis and end-of-life care decisions that are relevant to palliative care during a conference presentation.
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.
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—supporting integrating palliative cancer care for all patients with advanced cancer within eight weeks of their diagnosis—but state that patients with early-stage cancer may also benefit.3
Updated in 2018, Clinical Practice Guidelines for Quality Palliative Care, 4th edition "calls for a seismic shift in the delivery of this specialized care by urging all health care professionals and organizations to integrate it into the services they provide to people living with serious illness. The guidelines also include tools, resources and practice examples to help with implementation.4
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.5
Starting Palliative Care Early
Essential Components of a Palliative Care Service
What you can expect a palliative care consultation to do or provide:6
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.
An encouraging trend in the US was found in shorter times from cancer diagnosis to the first use of specialty palliative care, from 13.7 weeks in 2001 to 8.3 weeks in 2015, in a study of patients diagnosed with metastatic non–small-cell lung cancer.8
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.
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:
Early Palliative Care Helps Families
Even when people are getting the best of cancer treatment, they often feel like they need more help with organizing their care and managing symptoms and side effects. Helpsy empowers members to take control of their health through a real-time virtual nurse support service. This service is available via mobile devices, a Helpsy website and automated phone calls.
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."17
Finding a Palliative Care Service
Talk to Your Doctor
The Center to Advance Palliative Care suggests the following when seeking a palliative care consultation:18
“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 Nancy Hepp, MS; last update January 26, 2021.
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
- The ASCO Post: Facing Death: Having the Difficult Conversation with Your Patients
- Psychedelic Support
More from Our Resources Database
- Integrative Oncology Talk
- National Cancer Institute: Cancer Pain Control: Support for People with Cancer
- American Society of Clinical Oncology: Cancer.Net
- Raymond Chang, MD: Beyond the Magic Bullet: The Anti-Cancer Cocktail
- Donald I. Abrams, MD, and Andrew T. Weil, MD: Integrative Oncology, 2nd Edition