Palliative Care: Improving Quality of Life
Specialized medical care focused on relief from symptoms and stress of serious illness
Important: Common Misconceptions About Palliative Care
Palliative care is NOT the same as hospice or end-of-life care. This is one of the most common and harmful misconceptions. Palliative care can and should be provided alongside curative treatment at any stage of serious illness, from diagnosis onwards.
The Truth About Palliative Care:
- Can be given at the same time as treatments aimed at curing your cancer
- Appropriate at any age and at any stage of serious illness
- Can begin at diagnosis or early in treatment
- Research shows it improves quality of life AND may extend survival
- It's an extra layer of support, not a replacement for cancer treatment
Quick Facts About Palliative Care
- Specialized medical care focused on improving quality of life
- Addresses physical, emotional, social, and spiritual needs
- Provided by a team including doctors, nurses, social workers, and chaplains
- Can start at diagnosis and continue alongside any treatment
- Studies show patients who receive early palliative care have better quality of life
- May also improve survival compared to standard care alone
What is Palliative Care?
Palliative care is specialized medical care for people living with serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care provides relief from symptoms, pain, and stress of serious illness—whatever the diagnosis, whatever the prognosis.
It is provided by a specially trained team of doctors, nurses, and other specialists who work together with your other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient's prognosis.
Core Principles of Palliative Care
- Whole-person care: Addresses physical, emotional, social, and spiritual needs
- Patient-centered: Respects your goals, values, and preferences
- Family-focused: Includes support for family members and caregivers
- Team-based: Coordinated care from multiple specialists
- Communication: Helps you understand your illness and treatment options
- Coordination: Works alongside all your other medical care
Research shows: Patients with metastatic lung cancer who received early palliative care alongside standard oncology care had better quality of life, less depression, and lived an average of 2.7 months longer than those who received standard oncology care alone (New England Journal of Medicine, 2010).
Understanding Common Misconceptions
Unfortunately, many people and even some healthcare providers misunderstand what palliative care is. These misconceptions can prevent people from receiving care that could significantly improve their quality of life. Let's address the most common myths:
Palliative care is the same as hospice care.
Palliative care can be provided at any stage of illness and can be given alongside curative treatment. Hospice is a type of palliative care for people who are likely in the last months of life (typically with a prognosis of 6 months or less). All hospice is palliative care, but not all palliative care is hospice.
Palliative care means giving up on treatment or that death is near.
Palliative care is about living as well as possible, no matter how long that may be. You can receive palliative care while actively pursuing curative treatment. It doesn't mean stopping treatment—it means adding an extra layer of support to help you feel better during treatment.
You should wait until later in your illness to ask for palliative care.
Research shows that early palliative care leads to better outcomes. The ideal time to start is as soon as you're diagnosed with a serious illness. Starting early helps you build a relationship with the team and get help managing symptoms before they become severe.
Palliative care is only for cancer patients.
While commonly used in cancer care, palliative care is appropriate for anyone with a serious illness, including heart disease, lung disease, kidney failure, dementia, and many other conditions.
If I see a palliative care doctor, I can't see my regular oncologist anymore.
Palliative care works alongside your regular doctors. Your oncologist remains your primary cancer doctor. The palliative care team provides additional support and coordinates with your oncologist to ensure comprehensive care.
Palliative care is only available in hospitals.
Palliative care can be provided in many settings: hospitals, outpatient clinics, cancer centers, long-term care facilities, and even at home. Many cancer centers now have outpatient palliative care clinics.
Who Benefits from Palliative Care
Palliative care is appropriate for anyone with a serious illness, at any age, and at any stage of illness. You do NOT need to be terminally ill or stop treatment to receive palliative care.
Ideal Candidates for Palliative Care
Starting at diagnosis helps manage treatment side effects from the beginning
Help managing side effects while pursuing curative therapy
Comprehensive symptom management and support with decision-making
Expert help with pain, nausea, fatigue, or other difficult symptoms
Support understanding treatment options and clarifying goals
Help coordinating care among different doctors
Support for loved ones dealing with stress and practical concerns
Additional layer of care focused on your quality of life
Services Provided by Palliative Care
Palliative care takes a comprehensive approach to your wellbeing, addressing all aspects of living with serious illness:
Pain Management
Palliative care doctors are experts in managing complex pain. They use medications, therapies, and other approaches to provide relief while minimizing side effects.
- Assessment of pain types and sources
- Comprehensive medication management
- Non-medication approaches (physical therapy, nerve blocks)
- Regular adjustment based on your needs
Symptom Management
Help with all symptoms related to cancer and its treatment:
- Nausea and vomiting
- Fatigue and weakness
- Shortness of breath
- Loss of appetite
- Sleep problems
- Constipation or diarrhea
- Skin problems
Emotional & Psychological Support
Address the emotional impact of serious illness:
- Counseling for anxiety and depression
- Coping strategies
- Support groups
- Stress management
- Adjustment to illness and limitations
Spiritual Support
Help with existential and spiritual concerns:
- Chaplain services
- Exploring questions of meaning and purpose
- Connection to faith communities
- Support for spiritual distress
Communication & Decision Support
Help navigating complex medical decisions:
- Understanding your diagnosis and prognosis
- Explaining treatment options
- Clarifying goals of care
- Advance care planning
- Family meetings
- Mediating disagreements
Practical Support
Assistance with daily challenges:
- Social work services
- Financial counseling
- Transportation assistance
- Home care coordination
- Medical equipment needs
- Insurance navigation
Care Coordination
Help managing multiple aspects of care:
- Communication with all your doctors
- Coordinating appointments
- Medication reconciliation
- Transition planning (hospital to home)
- 24/7 access to palliative care team
Family & Caregiver Support
Support for your loved ones:
- Caregiver education and training
- Respite care coordination
- Family counseling
- Bereavement support
- Practical assistance
The Palliative Care Team
Palliative care is delivered by an interdisciplinary team of healthcare professionals who work together to address all aspects of your care:
Palliative Care Physician
Doctor with specialized training in symptom management and communication. Board-certified in palliative medicine. Leads the team and coordinates with your oncologist.
Palliative Care Nurse
Registered nurse with expertise in symptom assessment and management. Often the first point of contact. Provides education and ongoing support.
Social Worker
Helps with practical concerns, emotional support, financial issues, and community resources. Assists with advance care planning and family dynamics.
Chaplain
Provides spiritual and existential support regardless of religious background. Helps with questions of meaning, faith, and values.
Clinical Pharmacist
Expert in medication management, especially pain medications. Reviews all medications for interactions and helps optimize symptom control.
Psychologist/Counselor
Provides mental health support, counseling for anxiety and depression, and coping strategies for patients and families.
Nutritionist
Helps with dietary concerns, managing nutrition during illness, and dealing with appetite changes or eating difficulties.
Physical/Occupational Therapist
Helps maintain function, mobility, and independence. Provides strategies for conserving energy and managing daily activities.
How the Team Works
- Team members meet regularly to discuss your care
- They communicate with your oncologist and other specialists
- Care plans are individualized to your specific needs
- You'll typically see one or more team members at each visit
- The team is available to answer questions between visits
Palliative Care vs. Hospice: Understanding the Difference
One of the biggest sources of confusion is the difference between palliative care and hospice. While they share similar philosophies and approaches, they serve different purposes and are provided at different times:
| Aspect | Palliative Care | Hospice Care |
|---|---|---|
| When It's Provided | At any stage of serious illness, from diagnosis onwards | When life expectancy is 6 months or less (if illness runs its usual course) |
| Prognosis Required | No specific prognosis needed | Terminal prognosis (6 months or less) |
| Curative Treatment | Can receive alongside curative treatment | Focus shifts from cure to comfort; stops most curative treatments |
| Goal | Improve quality of life while treating the disease | Comfort and quality of life at end of life |
| Cancer Treatment | Continue chemotherapy, radiation, immunotherapy as desired | Stop most cancer treatments; may use radiation for pain control |
| Where Provided | Hospitals, outpatient clinics, cancer centers, sometimes at home | Usually at home, also in hospice facilities or nursing homes |
| Duration | Can continue for years | Typically weeks to months |
| Insurance Coverage | Covered like other medical care (varies by plan) | Medicare hospice benefit covers all related care |
| Relationship with Oncologist | Continue seeing your oncologist | Oncologist typically no longer primary doctor |
| Can Transition To | Can transition to hospice when appropriate | Final stage of care |
Think of It This Way:
- Palliative Care: Extra layer of support that can begin at diagnosis and continue throughout your illness, even while receiving chemotherapy or other cancer treatments
- Hospice: Specialized care for the final phase of life, when the focus shifts entirely to comfort rather than treating the cancer
- The Relationship: Many people receive palliative care for months or years before ever needing hospice. Some may never need hospice if their cancer is cured or controlled long-term.
When to Ask for a Palliative Care Referral
The best time to start palliative care is early in your illness. You don't need to wait until you're feeling very sick or until treatment options are limited. In fact, research shows early palliative care leads to better outcomes.
Ideal Times to Request Palliative Care
At Diagnosis
Especially for advanced cancer, starting palliative care early provides immediate support and establishes a relationship with the team.
When Starting Treatment
Help managing side effects from chemotherapy, radiation, or other treatments from the beginning.
Uncontrolled Symptoms
If pain, nausea, fatigue, or other symptoms aren't well controlled despite your doctor's efforts.
Frequent Hospitalizations
Multiple ER visits or hospital admissions may indicate need for better symptom management.
Complex Decisions
When facing difficult choices about treatment options and need help understanding your options.
Multiple Specialists
When seeing many different doctors and need help coordinating care.
Emotional Distress
Significant anxiety, depression, or difficulty coping with your diagnosis.
Caregiver Strain
When family members need support or help with caregiving.
Declining Function
Difficulty with daily activities or decreased quality of life.
Wanting Support
Simply wanting extra support and someone to help navigate your illness—no specific crisis needed.
How to Request Palliative Care
- Ask your oncologist: "I'd like a referral to palliative care to help with symptom management and support."
- Be direct: Don't wait for your doctor to suggest it. Many doctors appreciate when patients are proactive.
- Clarify misconceptions: If your doctor seems hesitant, explain that you understand palliative care is not hospice and you want it alongside your cancer treatment.
- Contact directly: Many cancer centers allow patients to self-refer to palliative care. Call the palliative care office directly.
- Involve family: Family members can also request a palliative care consultation on your behalf.
Research and Evidence
Palliative care is not just compassionate—it's evidence-based medicine. Numerous studies have demonstrated its benefits:
Key Research Findings
Improved Quality of Life
Multiple randomized controlled trials show palliative care significantly improves quality of life compared to standard oncology care alone. Patients report better physical and emotional wellbeing.
Source: JAMA, 2009; Journal of Clinical Oncology, 2017
Reduced Depression
Patients receiving early palliative care have significantly lower rates of depression and anxiety compared to those receiving standard care.
Source: New England Journal of Medicine, 2010
Better Symptom Control
Palliative care leads to better management of pain, nausea, fatigue, and other symptoms throughout the cancer trajectory.
Source: Journal of Pain and Symptom Management, 2018
Improved Survival
Landmark study showed patients with metastatic lung cancer who received early palliative care lived 2.7 months longer than control group, despite receiving less aggressive end-of-life care.
Source: New England Journal of Medicine, 2010
Fewer Emergency Visits
Palliative care reduces emergency department visits and hospitalizations through better symptom management and care planning.
Source: Journal of Palliative Medicine, 2016
More Goal-Concordant Care
Patients receiving palliative care are more likely to receive care that matches their goals and preferences.
Source: JAMA Oncology, 2018
Caregiver Benefits
Family members and caregivers of patients receiving palliative care report less stress, better coping, and higher satisfaction with care.
Source: Journal of Clinical Oncology, 2019
Professional Recommendations: Both the American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN) recommend that all patients with advanced cancer receive dedicated palliative care services early in the disease course, concurrent with active treatment.
What to Expect from Palliative Care
Your First Visit
The initial palliative care consultation is comprehensive and typically lasts 60-90 minutes. Here's what usually happens:
Comprehensive Assessment
- Detailed discussion of your symptoms
- Review of your medical history
- Current medications and treatments
- Physical examination if needed
- Assessment of pain levels and other symptoms
Understanding Your Goals
- What's most important to you?
- Your hopes and concerns
- What quality of life means to you
- Your understanding of your illness
- Treatment preferences
Psychosocial Assessment
- How you're coping emotionally
- Support systems and family
- Practical concerns (financial, transportation, etc.)
- Spiritual or existential concerns
Care Plan Development
- Recommendations for symptom management
- Medication adjustments if needed
- Referrals to other team members (social work, chaplain, etc.)
- Plan for follow-up
- 24/7 contact information
Ongoing Care
After the initial visit, ongoing palliative care typically includes:
Regular Visits
Usually monthly or as needed, either in clinic or by phone
Symptom Monitoring
Ongoing assessment and adjustment of symptom management
Care Coordination
Communication with your oncologist and other doctors
24/7 Support
Access to palliative care team for urgent issues
Family Meetings
When needed to discuss care plans or difficult decisions
Advance Care Planning
Ongoing discussions about your wishes for future care
Questions to Ask Your Palliative Care Team
About the Service
- How will palliative care work alongside my cancer treatment?
- Who are the members of the palliative care team?
- How often will I see the palliative care team?
- Will you communicate with my oncologist?
- Can I contact you between appointments?
- Is there 24/7 support available?
About Symptom Management
- What can you do to help with my pain/nausea/fatigue?
- What medications might you recommend?
- Are there non-medication approaches that might help?
- How quickly can we expect symptom improvement?
- What should I do if symptoms get worse?
About Goals and Planning
- How can you help me understand my treatment options?
- Can you help me talk to my family about my wishes?
- What is advance care planning?
- How do we make sure my care matches what's important to me?
About Practical Support
- Can you help with financial or insurance concerns?
- Is support available for my family/caregivers?
- Can you help coordinate home care if needed?
- Are there support groups or other resources?
About the Future
- How long can I continue receiving palliative care?
- What happens if I go to the hospital?
- Will palliative care continue if I stop cancer treatment?
- How is palliative care different from hospice?
How to Access Palliative Care
Finding Palliative Care Services
Cancer Centers
Most comprehensive cancer centers have palliative care teams:
- Inpatient consultation services
- Outpatient palliative care clinics
- Often can self-refer
- Integrated with oncology care
Hospitals
Many hospitals offer palliative care:
- Consult service for hospitalized patients
- Some have outpatient clinics
- Request through your doctor
Community Programs
Palliative care in the community:
- Home-based palliative care
- Hospice programs (often provide palliative care too)
- Community health centers
Telehealth
Virtual palliative care options:
- Video visits with palliative care teams
- Phone consultations
- Helpful for rural areas or mobility issues
Insurance Coverage
- Medicare: Covers palliative care services like any other medical care (not limited to hospice)
- Private Insurance: Most plans cover palliative care; check your specific plan
- Medicaid: Coverage varies by state but generally includes palliative care
- No Insurance: Some programs offer sliding scale fees or charity care
- Important: Palliative care is NOT hospice and doesn't require hospice eligibility or enrollment
Next Steps
- Talk to your oncologist: Ask for a palliative care referral
- Call your cancer center: Ask if they have palliative care services
- Find a provider: Use the Get Palliative Care directory
- Don't wait: Early palliative care provides the most benefit
- Advocate for yourself: If your doctor seems reluctant, explain that research shows palliative care improves outcomes
Frequently Asked Questions
Does asking for palliative care mean I'm giving up on treatment?
Absolutely not. Palliative care is designed to be provided alongside curative treatment. You can continue chemotherapy, immunotherapy, radiation, or any other cancer treatment while receiving palliative care. In fact, research shows that palliative care may help you tolerate cancer treatment better by managing side effects more effectively.
Will my oncologist be upset if I ask for palliative care?
Most oncologists welcome palliative care involvement. It provides additional support for you and helps the oncologist by having experts manage complex symptoms. If your oncologist seems hesitant, it may be due to misconceptions about palliative care. You can explain that you want it as additional support, not as a replacement for oncology care.
When is it too early for palliative care?
It's never too early. Research shows the best outcomes come from starting palliative care early—even at diagnosis for advanced cancer. The earlier you start, the earlier you can benefit from symptom management, support, and care coordination.
When is it too late for palliative care?
It's never too late. Even if you're far along in your illness, palliative care can still help with symptom management and support. However, starting earlier provides more time to build relationships and address issues before they become severe.
Can I stop palliative care if I don't find it helpful?
Yes, absolutely. Palliative care is voluntary and you can stop at any time. However, give it a fair chance—sometimes it takes a few visits to see the full benefits.
Will I have to go to another hospital or clinic?
Often palliative care is available where you already receive cancer treatment. Many cancer centers have integrated palliative care clinics. If not available at your location, services may be available via telehealth.
Does palliative care mean I have to stop cancer treatment?
No. This is one of the biggest misconceptions. Palliative care supports you DURING cancer treatment. You only stop cancer treatment if and when YOU decide to, based on your own goals and values.
Is palliative care only for cancer?
No. While commonly used in cancer care, palliative care is appropriate for anyone with a serious illness, including heart disease, lung disease, dementia, kidney failure, and many other conditions.
Will pain medications make me "foggy" or addicted?
Palliative care doctors are experts in pain management and use medications carefully to control pain while minimizing side effects. They start low and adjust based on your response. When used appropriately for medical reasons, addiction is extremely rare. Your clarity of mind is important and the team will work to maintain it.
How is palliative care different from what my oncologist already provides?
Your oncologist focuses primarily on treating your cancer. Palliative care focuses on your quality of life, symptom management, and overall wellbeing. They work together—your oncologist treats the cancer while the palliative care team helps you live as well as possible during treatment. Palliative care also typically has more time for longer visits and detailed discussions.
Can my family members meet with the palliative care team?
Yes. Family meetings are an important part of palliative care. The team can help facilitate discussions with family members, address their concerns, and provide support for caregivers.
What if I live far from a palliative care center?
Many palliative care services are now available via telehealth. You may also have access to home-based palliative care through hospice organizations (even if you don't enroll in hospice). Ask your oncologist about options in your area.
Related Resources
External Resources
- Get Palliative Care: getpalliativecare.org - Provider directory and patient information
- Center to Advance Palliative Care: capc.org - Educational resources
- American Academy of Hospice and Palliative Medicine: aahpm.org - Find a palliative care physician
- National Hospice and Palliative Care Organization: nhpco.org - Information and resources
- Cancer.Net: ASCO's patient information on palliative care
Medical Disclaimer: This information is educational only. Palliative care should be discussed with your healthcare team and tailored to your specific situation, needs, and goals. The decision to pursue palliative care is personal and should be made in consultation with your doctors and loved ones.