Palliative Care
Palliative care, sometimes called supportive or comfort care, is a type of comprehensive medical care for people diagnosed with a serious illness. Palliative care is focused on relieving and preventing physical, emotional and social side effects caused by illness or curative treatments.1 Palliative care may be given in the hospital, at home, at an outpatient clinic or at a long-term care facility. Palliative care can be administered to patients of all ages and at any stage of disease, and is not the same as end-of-life or hospice care.1 Unlike hospice care, which is usually administered when the goal is no longer to cure the illness, palliative care can be given in conjunction with curative treatment and can be initiated as soon as the disease is diagnosed.1
Data and Statistics
The American Society of Clinical Oncology (ACSO) encourages the integration of palliative care services for patients with advanced cancer into all standard oncology practices.2 Research shows that patients with cancer who receive palliative care report improved mood, health care utilization, quality of life, and patient satisfaction.3 Some research also showed prolonged survival for patients with metastatic non-small cell lung cancer who received palliative care concurrently with cancer treatments, compared to patients who received cancer treatments alone.4
When and how palliative care is provided can make a significant difference in health outcomes. According to one study, interdisciplinary specialist palliative care in stand-alone clinics remains the gold standard for ambulatory palliative care because this approach has the greatest impact on multiple patient and caregiver outcomes.32 Despite this finding, palliative care is still inaccessible for many patients due to variety of reasons.
Globally, The World Health Organization (WHO) estimates that only 14% of people who need palliative care receive these services.5 In the U.S., 72% of U.S. hospitals with 50 or more beds report having a palliative care program, and 94% of hospitals with 300 or more beds have a dedicated palliative care team.6 However, over 80% of health institutions in the US with palliative care programs report insufficient capacity to meet increasing demands.3 Access to palliative care is especially limited in rural areas, with only 17% of rural hospitals in the U.S. reporting palliative care programs.5
In addition to lack of access to palliative care, there is still confusion about its purpose. A 2020 study revealed that only 29% of U.S. adults know about palliative care, and among them, 87% had misconceptions about it.7 The most common misconceptions were automatically associating palliative care with death (44%), equating palliative care with hospice (38%), believing palliative care could not be concurrent with treatments (18%), and seeing palliative care as “giving up” (16%).7
Analysis of the National Cancer Institute’s Health Information National Trends Survey revealed that among cancer survivors, 66% reported no knowledge of palliative care, 18% knew a little, and only 17% were able to explain palliative care to someone else.8 However, cancer survivors who reported existing knowledge of palliative care had fewer misconceptions and were less likely to associate palliative care with death, hospice care or giving up.8 A separate multivariable analysis indicated that cancer survivors of color are significantly less likely to report knowledge of palliative care.9
Another study of the knowledge of palliative care in the U.S. general population showed that self-identified white women have greater odds of being more aware of palliative care. Those reporting Hispanic ethnicity had lower odds.33 That same study suggests that some racial minorities underuse palliative care even with sufficient access; this might be due to communication barriers, lack of trust in the health care system, and lack of insurance coverage or limited reimbursement. These data suggest there is limited awareness of palliative care in the United States, despite its documented benefits. Addressing this awareness gap is a priority to change norms around using palliative care services. Community- and population-based interventions are necessary to raise awareness and inform the public about palliative care.
Best Practices for Communicating About Palliative Care
Communicating with Subgroups
Communication-related issues may also play a role in health disparities and patient engagement. Consider the information most useful to each subgroup (see below for specific messaging and read more on health disparities here). Tailor communication to these priority populations with messages that also address conditions where these communities live, learn, work and play, as these social determinants of health can impact a wide range of health risks and outcomes. To ensure messages resonate with the intended audience, we also recommend referring to the National Networks’ existing resources and adapting messages to reflect individuals with lived experiences.
Palliative Care Messages and Graphics
Download All Messages and Graphics How to Post on Social Media
Topics | Suggested Images |
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Topic: Clearly define palliative use and its benefits Do your patients know what #palliativecare is? It is often confused with #hospice care, so be sure to remind your patients: palliative care is not end-of-life care! This comprehensive care can help manage symptoms for people of all ages and at every stage of illness. Here are just some of the benefits patients might experience. #cdc #dcpc #cctpalliative | |
Topic: Highlight the global underutilization of palliative care services #DidYouKnow that World Health Organization estimates 86% of people who need palliative care do not receive it? Two reasons for this are lack of awareness and misconceptions. Share brief resources like this one from the National Institute of Nursing Research to improve understanding and encourage participation #cdc #dcpc #cctpalliative | |
Topic: Explain the difference between palliative care and hospice/end-of-life care Providers, be sure to help your patients understand the differences between #palliativecare and #hospice care. Doing so can increase patient enrollment in palliative programs and improve quality of life for #cancer survivors. #cdc #dcpc #cctpalliative | |
Topic: Help palliative care teams understand the needs of diverse demographics Access to and use of #palliativecare services can differ dramatically between patients based on factors such as race, ethnicity, gender or sexual identity, language, insurance and SES, and more. Engage your coalition members in reading and discussing health equity research from the Center to Advance Palliative Care to better address the palliative needs of diverse populations. https://tinyurl.com/mrsv97tx #cdc #dcpc #cctpalliative #healthequity | |
Topic: Share resources to support palliative caregivers of family members with cancer #Palliative caregivers encounter their own challenges, such as emotional, spiritual and financial burdens. Share this helpful information from CaringInfo to help #caregivers find support and maintain their own wellbeing. https://tinyurl.com/yhtfthwe #cdc #dcpc #cctpalliative #caregiving | |
Topic: Provide multilingual resources with basic palliative care information Research shows that providing multilingual resources can improve access to #palliativecare for Hispanic and Latino/a/x patients with #cancer. If your patients need basic information about palliative care, share this Spanish-language handout from Get Palliative Care. https://tinyurl.com/3fcb67pj #cdc #dcpc #cctpalliative #hispanichealth | |
Topic: Share examples of effective PSE changes After observing low rates of #palliative support among cancer patients in Georgia, the Georgia Cancer Control Consortium helped to develop legislation that increased public education and formed a Palliative Care Council to advise state policies. Read more about this effective #PSE change to discover how your program can guide legislation in your area. https://tinyurl.com/4yzabm33 #cdc #dcpc #cctpalliative | |
Topic: Remind providers to start palliative care at the time of diagnosis #DidYouKnow that referring patients to #palliativecare later in the treatment process might cause your patients to associate palliative care with end-of-life care? Remember to recommend palliative care at the time of diagnosis or at the time of treatment initiation. #cdc #dcpc #cctpalliative | |
Topic: Creating a welcoming environment for LGBTQI+ patients Caring for #LGBTQI+ patients requires knowing how to communicate respectfully and making them feel at ease. When having conversations about #palliativecare, remember these strategies from the National LGBT Cancer Network for creating a welcoming environment. #cdc #dcpc #cctpalliative #lgbthealth | |
Topic: Providing inclusive care for transgender patients How you communicate with #transgender patients about #palliativecare could play a critical role in whether they use these services. Consider these recommendations for transgender inclusivity from the National LGBT Cancer Network. #cdc #dcpc #cctpalliative #transhealth | |
Topic: Promote the use of telehealth services to administer certain aspects of palliative care to rurally located patients Providers can use #telehealth services to provide certain aspects of palliative care, such as medication monitoring, consultations and specialist appointments. Consider using telehealth to reach patients who are located in rural or remote locations. #cdc #dcpc #cctpalliative | |
Topic: Distribute financial information and resources to offset costs of palliative care Financial burdens can become a major barrier to #palliativecare for some patients and #caregivers. Help them navigate financial issues by directing patients and their caregivers to CaringInfo’s finances resource page, which answers questions about Medicare, Medicaid, insurance, managing medical debt and more. https://tinyurl.com/3rm6esrp #cdc #dcpc #cctpalliative | |
Topic: Encourage providers to participate in insurance plans with high coverage Financial concerns may be a barrier to #palliativecare for many patients, particularly those of lower socioeconomic status, those with limited insurance plans, or those without any insurance coverage. Participating in insurance plans with a wider range of coverage and that cover services like telehealth can expand access for underserved populations. #cdc #dcpc #cctpalliative |
Download All Messages and Graphics How to Post on Social Media
How to Post on Social Media
Start by downloading the ZIP file above. Then double click the downloaded file to unzip and open the folder. Inside, you’ll find three CSV files.
- Messaging.csv contains captions for all messages in the toolkit, organized by topic.
- Bulk – Instagram.csv contains captions for all Instagram messages, along with graphics URLs that can be used to bulk schedule both text and images.
- Bulk – LinkedIn-Facebook.csv contains captions for all LinkedIn, Facebook, and Twitter messages, along with graphics URLs that can be used to bulk schedule both text and images.
- Bulk – Twitter.csv contains captions for all Twitter messages, along with graphics URLs that can be used to bulk schedule both text and images.
Inside the main folder, you’ll also see two sub-folders containing the messaging graphics for all major platforms. The first folder contains rectangular images suited for use on Facebook, Twitter, and LinkedIn. The second folder contains square images suited for Instagram.
Select your platform below for additional instructions.
Palliative Care Resources
Resource | Description |
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American Academy of Hospice and Palliative Care | A professional organization for physicians specializing in hospice and palliative medicine, nurses, and other healthcare providers. Its core mission is to expand access of patients and families to high-quality palliative care and advance the discipline of hospice and palliative medicine through professional education and training, development of a specialist workforce, support for clinical practice standards, and research and public policy. |
CancerCare | A national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. |
CaringInfo | A program of the National Hospice and Palliative Care Organization that provides free resources to educate and empower patients and caregivers. |
Center to Advance Palliative Care | CAPC is the leading resource for palliative care program development and growth. Access essential palliative care tools, education, resources and training for healthcare professionals. |
ClinicalTrials.gov | A compendium of completed, recruiting, and upcoming clinical trials related to palliative care services. |
Cancer Financial Assistance Coalition | A coalition of organizations helping cancer patients manage their financial challenges. |
Get Palliative Care | A website providing clear, comprehensive palliative care information for people living with a serious illness. |
International Palliative Care Resource Center | IPCRC is dedicated to making palliative care resources accessible for health care professionals, building palliative care capacity worldwide and providing a dynamic and constantly expanding website. |
Leukemia & Lymphoma Society Patient Financial Assistance Programs | A series of programs offering financial assistance to patients diagnosed with blood cancers such as leukemia, lymphoma, or multiple myeloma. |
Make it Your Own | A tool for helping medical professionals to create tailored health communications with evidence-based messaging and customized images. |
National Cancer Institute | Review frequently asked questions and misconceptions about palliative care, and access resources for continued learning. |
National Hospice and Palliative Care Organization | The nation’s largest membership organization for providers and professionals who care for people affected by serious and life-limiting illness. NHPCO gives ongoing inspiration, practical guidance, and legislative representation to hospice and palliative care providers so they can enrich experiences for patients and ease caregiving responsibilities and emotional stress for families. |
References
- National Cancer Institute. Palliative Care in Cancer – National Cancer Institute. www.cancer.gov. Published January 12, 2018. https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet#what-is-palliative-care
- Ferrell BR, Temel JS, Temin S, et al. Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update. Journal of Clinical Oncology. 2017;35(1):96-112. doi:https://doi.org/10.1200/jco.2016.70.1474
- Agarwal R, Epstein AS. The Role of Palliative Care in Oncology. Semin Intervent Radiol. 2017;34(4):307-312. doi:10.1055/s-0037-1608702
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742. doi:10.1056/NEJMoa1000678
- World Health Organisation. Palliative care. World Health Organisation. Published 2021. https://www.who.int/health-topics/palliative-care
- America’s care of serious illness: state-by-state report card on access to palliative care in our nation’s hospitals 2019. Center to Advance Palliative Care and National Palliative Care Research Center. https://reportcard.capc.org/wp-content/uploads/2020/05/CAPC_State-by-State-Report-Card_051120.pdf.
- Flieger SP, Chui K, Koch-Weser S. Lack of Awareness and Common Misconceptions About Palliative Care Among Adults: Insights from a National Survey. J Gen Intern Med. 2020;35(7):2059-2064. doi:10.1007/s11606-020-05730-4
- HINTS Brief 51: Knowledge and Attitudes Toward Palliative Care Among Cancer Survivors. NCI Health Information National Trends Survey. Accessed July 18, 2023. https://hints.cancer.gov/docs/Briefs/HINTS_Brief_51.pdf
- Stal J, Nelson MB, Mobley EM, et al. Palliative care among adult cancer survivors: Knowledge, attitudes, and correlates. Palliative & Supportive Care. 2022;20(3):342-347. doi:10.1017/S1478951521000961
- Hui D, Heung Y, Bruera E. Timely Palliative Care: Personalizing the Process of Referral. Cancers (Basel). 2022;14(4):1047. Published 2022 Feb 18. doi:10.3390/cancers14041047
- May P, Normand C, Cassel JB, et al. Economics of Palliative Care for Hospitalized Adults With Serious Illness: A Meta-analysis. JAMA Intern Med. 2018;178(6):820-829. doi:10.1001/jamainternmed.2018.0750
- Gardiner C, Taylor B, Goodwin H, Robinson J, Gott M. Employment and family caregiving in palliative care: An international qualitative study. Palliat Med. 2022;36(6):986-993. doi:10.1177/02692163221089134
- Ahluwalia SC, Fried TR. Physician factors associated with outpatient palliative care referral. Palliat Med. 2009;23(7):608-615. doi:10.1177/0269216309106315
- Taber JM, Ellis EM, Reblin M, Ellington L, Ferrer RA. Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample. PLoS One. 2019;14(8):e0219074. Published 2019 Aug 15. doi:10.1371/journal.pone.0219074
- Brooks JV, Poague C, Formagini T, Roberts AW, Sinclair CT, Keirns CC. Palliative Care’s Role Managing Cancer Pain During the Opioid Crisis: A Qualitative Study of Patients, Caregivers, and Clinicians. J Pain Symptom Manage. 2020;60(6):1127-1135.e2. doi:10.1016/j.jpainsymman.2020.06.039
- Ferrell BR, Chung V, Koczywas M, Smith TJ. Dissemination and Implementation of Palliative Care in Oncology. J Clin Oncol. 2020;38(9):995-1001. doi:10.1200/JCO.18.01766
- Lee K, Gani F, Canner JK, Johnston FM. Racial disparities in utilization of palliative care among patients admitted with advanced solid organ malignancies. Am J Hosp Palliat Med. 2020:1049909120922779
- Bazargan M, Bazargan-Hejazi S. Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature. Am J Hosp Palliat Care. 2021;38(6):688-718. doi:10.1177/1049909120966585
- McNair R, Anderson S, Mitchell A. Addressing health inequalities in Victorian lesbian, gay, bisexual and transgender communities. Health Promot J Austr. 2001; 11(1):32–38
- Berkman C, Stein GL, Godfrey D, Javier NM, Maingi S, O’Mahony S. Disrespectful and inadequate palliative care to lesbian, gay, and bisexual patients. Palliative & Supportive Care. 2023:1-6. doi:10.1017/S1478951523001037
- Berkman C, Stein GL, Javier NM, O’Mahony S, Maingi S, Godfrey D. Disrespectful and inadequate palliative care to transgender persons. Palliative & Supportive Care. 2023:1-7. doi:10.1017/S1478951523001104
- Enguidanos S, Storms AD, Lomeli S, van Zyl C. Improving Palliative Care Knowledge among Hospitalized Hispanic Patients: A Pilot Study. J Palliat Med. 2022;25(8):1179-1185. doi:10.1089/jpm.2021.0559
- Oh H, Trinh MP, Vang C, Becerra D. Addressing Barriers to Primary Care Access for Latinos in the U.S.: An Agent-Based Model. Journal of the Society for Social Work and Research. 2020;11(2):165-184. doi:https://doi.org/10.1086/708616
- Muñoz-Blanco S, Raisanen JC, Donohue PK, Boss RD. Enhancing Pediatric Palliative Care for Latino Children and Their Families: A Review of the Literature and Recommendations for Research and Practice in the United States. Children. 2018; 5(1):2. https://doi.org/10.3390/children5010002
- Rhee MK, Jang Y, Liu M, Haley WE, Enguidanos S. UNDERSTANDING BARRIERS TO PALLIATIVE CARE USE AMONG ASIAN AMERICANS: A SYSTEMATIC REVIEW. Innovation in Aging. 2019;3(Supplement_1):S977-S978. doi:https://doi.org/10.1093/geroni/igz038.3542
- Witte, Catherine; Begay, Tamana D.; and Coe, Kathryn (2010) “Spiritual Care within Oncology Care: Development of a Spiritual Care Program at an Indian Health Service Hospital,” Journal of Health Disparities Research and Practice: Vol. 4: Iss. 3, Article 7.
- Isaacson, Mary J. PhD, RN, CHPN. Wakanki Ewastepikte: An Advance Directive Education Project With American Indian Elders. Journal of Hospice & Palliative Nursing 19(6):p 580-587, December 2017. | DOI: 10.1097/NJH.0000000000000392
- Pugh A, Castleden H, Giesbrecht M, Davison C, Crooks V. Awareness as a dimension of health care access: exploring the case of rural palliative care provision in Canada. J Health Serv Res Pol. 2019;24(2):108–115
- Cai Y, Lalani N. Examining Barriers and Facilitators to Palliative Care Access in Rural Areas: A Scoping Review. American Journal of Hospice and Palliative Medicine®. 2022;39(1):123-130. doi:10.1177/10499091211011145
- Gordon B, Mason B, Smith SLH. Leveraging Telehealth for Delivery of Palliative Care to Remote Communities: A Rapid Review. J Palliat Care. 2022;37(2):213-225. doi:10.1177/08258597211001184
- Adsersen M, Thygesen LC, Neergaard MA, et al. Higher Admittance to Specialized Palliative Care for Patients with High Education and Income: A Nationwide Register-Based Study. Journal of Palliative Medicine. 2023;26(1):57-66. doi:https://doi.org/10.1089/jpm.2022.0087
- Hui D. Palliative Cancer Care in the Outpatient Setting: Which Model Works Best? Curr Treat Options Oncol. 2019 Feb 11;20(2):17. doi: 10.1007/s11864-019-0615-8. PMID: 30741353.
- Trivedi N, Peterson EB, Ellis EM, Ferrer RA, Kent EE, Chou WS. Awareness of Palliative Care among a Nationally Representative Sample of U.S. Adults. J Palliat Med. 2019 Dec;22(12):1578-1582. doi: 10.1089/jpm.2018.0656. Epub 2019 Apr 30. PMID: 31038384; PMCID: PMC6998043.
- Moon HE, Haley WE, Rote SM, Sears JS. Caregiver Well-Being and Burden: Variations by Race/Ethnicity and Care Recipient Nativity Status. Innov Aging. 2020 Sep 15;4(6):igaa045. doi: 10.1093/geroni/igaa045. PMID: 33241124; PMCID: PMC7679974.
- Van Scoy L, Witt P, Bramble C, et al. Using a conversation game to engage underserved, black/African American communities in advance care planning. In: A22. Facilitating Palliative and End-of-Life Care. American Thoracic Society; 2019:A1078–A1078