Topic: Experts call for early palliative care for cancer patients
Summary
People with cancer need support and care not only at the end of life but from the time of diagnosis. At the 2024 American Society of Clinical Oncology (ASCO) annual meeting, the organization’s president urged cancer healthcare professionals to make palliative care central to cancer treatment. (Posted 7/17/24)
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Most relevant for: Cancer patients.
It may also be relevant for:
- people with breast cancer
- men with breast cancer
- people with colorectal cancer
- people with pancreatic cancer
- people with metastatic or advanced cancer
- people with ovarian cancer
- people with prostate cancer
- people with endometrial cancer
Relevance: Medium-High
What is ?
is specialized medical care focused on quality-of-life issues for patients and their families with serious illness. is helpful at any age or of illness and is beneficial when started soon after diagnosis.
Types of
Cancer patients’ needs may change from diagnosis through treatment and after. Oncologists and their staff play an important role in assessing and addressing the support needs of patients and referring patients to experts for palliative services, including:
- Symptoms and side effects of cancer or treatment
- Psychosocial and spiritual needs
- Cultural and ethical concerns and issues
- Family communication issues
- Referrals to specialists and hospice services when needed
Although may address end-of-life issues for patients with a serious illness, it is important to note that it differs from hospice care.
Why is this topic important?
is about helping people with serious illnesses feel better, mentally and physically. While it initially developed from end of life care, research increasingly shows the value of beginning earlier. By talking with patients about , doctors can learn about their patients’ preferences and are better able to honor those preferences throughout treatment.
Many patients mistake for end-of-life care or hospice and may turn down the opportunity to receive that could help them deal with the side effects of their cancer or treatment.
The American Society of Clinical Oncology weighs in
The American Society of Clinical Oncology (ASCO) is the largest organization for healthcare professionals who specialize in cancer. The theme of ASCO’s 2024 annual meeting was “The Art and Science of Cancer Care: From Comfort to Cure.” This theme refers to the role of palliative or supportive care in cancer care. In her keynote address, ASCO President Dr. Lynn Schuchter focused on providing support to people with cancer and their caregivers in a more holistic way.
Dr. Schuchter said, “By the art of care, I mean the human side of cancer medicine: engaging with patients and their families with deep compassion and understanding, weaving in supportive or as an integral part of treatment as we try to achieve the best possible outcome for our patients.”
Comfort is key
During her address, Dr. Schuchter noted that comfort requires communication. Doctors and other providers need to be able to talk with patients honestly and respectfully about their diagnosis and prognosis while also ensuring the patient’s comfort. One way that doctors can achieve this is by addressing barriers that may prevent patients from receiving early .
Misunderstandings about patients receiving include the following:
- It is often misunderstood and confused with hospice. Patients in treatment may mistakenly believe that means they need to stop treatments.
- Patients may misunderstand their situation or prognosis. For example, people with advanced cancer that no longer responds to treatment may have a false hope that they will be cured.
Dr. Schuchter explained, “These types of misunderstandings can cause patients to decline services until quite late. Importantly, these conversations must be had repeatedly over a span of time, so that patients can cope with the information and to best allow for advance care planning.”
Technology can help
As technology advances, Dr. Schuchter sees a role for artificial intelligence (AI). Tasks handled by AI can make more time available for doctors to spend with patients: “Importantly, we hope that AI will help reduce burnout by automating routine electronic health record tasks. Imagine keyboard liberation! More eye contact, more face time with our patients.”
In addition to focusing on supportive care at its annual conference, ASCO has taken action on this topic in two other ways: 1) publishing updated guidelines on , and 2) training more doctors in oncology and .
What do the guidelines say?
Dr. Schuchter’s words followed the release of an ASCO guideline update on . The updated guidelines suggest offering at the time of a cancer diagnosis or soon after. This includes cancer patients with unaddressed physical, psychosocial or spiritual distress; caregivers of patients with cancer; and patients with uncontrolled symptoms and quality-of-life concerns. The guidelines also suggest offering for people with advanced cancers and people who are participating in phase I clinical trials.
Doctors are also encouraged to refer caregivers of people with cancer to . is especially important for people with hard-to-treat symptoms or quality-of-life issues. An effective meeting touches on the person’s physical, psychological, spiritual, financial and social needs.
This update to ASCO’s 2016 guidance is based on research. A panel of experts reviewed many studies on quality of life, patient satisfaction, symptoms, caregiver burden and survival that show the benefits of . The experts emphasize that there is no downside to talking about support needs earlier or more often.
The National Comprehensive Care Network (NCCN) also supports the earlier use of . The panel recommends that people with cancer be informed about and screened for needs at their first visit and then repeatedly as clinically indicated.
What does this mean for me?
If you have cancer at any or care about someone who has cancer, the growing focus on palliative or supportive care is good news. It is important to be proactive and have a conversation with your care team to address any physical, emotional or social concerns you have related to your diagnosis or care. Your healthcare team should address all your questions and provide you with referrals to services as needed to address your concerns. Your doctors should ask about and address your symptoms, side effects and your emotional and physical wellbeing. It’s important to keep a list of your concerns and present your healthcare team with any unaddressed issues you may face.
If you have advanced cancer and have not already met with a specialist, ask to do so now, even if you have just been diagnosed. This specialist can help you with your emotional, practical or physical needs. If you are unsure of your needs, they can help you better understand what’s most important to you and how your needs might affect your treatment choices. Your family members or caregivers might also benefit from talking with a specialist. If you are participating in a phase I clinical trial, you might also want to ask about .
Reference:
Schuchter LM, 2024 President’s Address: “The Art and Science of Cancer Care: From Comfort to Cure.” June 1, 2024
Sanders JJ, Temin S, Ghoshel A, et al., for patients with cancer: An ASCO guideline update. Journal of Clinical Oncology; 2024; Published online May 15, 2024.
Disclosure: FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.
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posted 7/17/24
- What kind of outpatient services do you provide at this hospital/cancer center/clinic?
- Which services are available to me now?
- Do you have a specialist who can meet with me?
- I am bothered by this specific symptom or side effect (e.g., fatigue, rash, nausea, pain, mouth sores, hair loss). What do you recommend? Note: It is okay to ask for help with the same thing more than once or twice. Tell your healthcare team what you have already tried.
- I am dealing with this quality-of-life issue (sadness, money, spending time with loved ones, work, anxiety). Who can I talk to about this?
- My caregivers or loved ones are having trouble coping with my diagnosis. Can you refer us to a specialist who can support my care team?
The National Comprehensive Cancer Network (NCCN) Practice Guidelines on Standards of include:
- All cancer patients should be screened for needs at their initial visit, at appropriate intervals and as clinically indicated.
- Patients/families/caregivers should be informed that is an integral part of their comprehensive cancer care.
- specialists should be readily available to provide consultation or direct care to patients/families/caregivers and/or healthcare professionals who request or require their expertise.
Patients, families or caregivers with any of the following conditions or situations should be referred for palliative care:
- uncontrolled symptoms or pain
- moderate-to-severe distress related to diagnosis or treatment
- additional serious physical, psychiatric or psychosocial conditions
- unresolved concerns or lack of understanding about the course of their disease
- advanced cancers
- evidence of worsening prognosis
- communication barriers
- financial limitations
- family discord
Updated: 06/26/2024
The following studies are looking at for people diagnosed with cancer:
- Coaching for Family Caregivers of People with Advanced Cancer from Rural and Minority Communities. This study provides coaching to urban African Americans and white or African American families with cancer who live in the rural Southeast. Navigators working with a team provide six health coaching sessions either in person or over the phone to help with managing stress and coping, getting and asking for help, improving caregiving skills and decision-making/advance care planning.
- NCT04733469: EMPOWER 3: Improving Health Literacy and Utilization (EMPOWER 3). This study is designed to test an educational intervention to help patients understand , use it and feel better emotionally and physically.
- NCT04773639: of a Multi-Modal Intervention. This study evaluates a new approach to to address advanced care planning and psychosocial needs of patients with cancer.
- NCT06307535: Study of Meaning-Centered Psychotherapy for Caregivers to People With Cancer. Participants will complete questionnaires and will be assigned to receive psychotherapy for 7 sessions.
- NCT05477784: Cancer Parenting Program for the Enhancement of the Quality of Life of Patients With Advanced Cancer and Their Children (EC-PC). This trial examines the usefulness of two educational programs for parents with cancer who have a 5- to 17-year-old child.
Updated: 06/26/2024
The following resources can help you locate an expert near you.
Finding and hospice services
- The Center to Advance (CAPC) maintains a directory of programs by location.
- The National Hospice and Organization maintains a database of hospice providers by location.
Related experts
People experiencing side effects from cancer or treatment may benefit from a consultation with the following experts.
Acupuncture experts
- The National Certification Commission for Acupuncture and Oriental Medicine has a searchable directory of licensed acupuncturists.
Mental health experts
- Association of Oncology Social Workers: Database for finding a social worker by location.
- National Alliance on Mental Illness: Tips for finding a mental health professional.
- The Anxiety and Depression Association of America: Database of licensed professionals who provide telehealth services.
- Mental Health America: Tool for finding a mental healthcare professional based on people's current needs.
Nutritionists
- Eatright.org, the website for the Academy of Nutrition and Dietetics, has an online tool to find a nutritionist in your area. Search by specialty, including "cancer," "weight management" and "heart health."
Physical therapists
- The American Physical Therapy Association's ChoosePT.com website helps you to search for a physical therapist in your area.
Sexual health experts
- The Sexual Medicine Society of North America (SMSNA) has a search tool to find experts in your area who provide sexual healthcare services.
- The American Association of Sexuality Educators, Counselors and Therapists (AASECT) maintains a tool to help people find a nearby sexual health expert.
Sleep experts
- The American Academy of Sleep Medicine maintains the SleepEducation.org website, which includes a section on finding a sleep center by location.
Other ways to find experts
- Register for the FORCE Message Boards and post on the Find a Specialist board to connect with others who share your situation.
- National Cancer Institute (NCI)-Designated Comprehensive Cancer Centers have specialists to manage the symptoms and side effects of cancer prevention or treatment.
Updated: 06/26/2024