Palliative Care and Hospice

Chapter Opening — Robert's Story

Robert was 71 years old when his prostate cancer, first diagnosed eight years earlier, spread to his bones and liver despite multiple lines of treatment. His oncologist mentioned "palliative care," and Robert's heart sank. "Does this mean they're giving up on me?" he asked his wife.

It did not. Robert was referred to a palliative care team while still receiving active cancer treatment. A palliative care physician adjusted his pain medications so he could sleep through the night for the first time in months. A social worker helped his family navigate insurance questions. A counselor helped him process his fears. Robert continued chemotherapy for another fourteen months — but with far better quality of life than before the palliative care team became involved.

"I wish someone had told me about palliative care years ago," Robert later said. "I thought it meant the end. It actually gave me my life back."

Part 1: The Most Misunderstood Word in Cancer Care

If there is one word in medicine that causes more unnecessary fear than almost any other, it is "palliative." Many patients hear "palliative care" and immediately think it means "there is nothing more we can do" or "you are dying." This is one of the most harmful misconceptions in all of cancer care — and correcting it is one of the most important things this chapter can do.

Palliative care is not giving up. It is not the end. It is not hospice.

The NCCN defines palliative care as "an approach to patient- and family-centered health care that focuses on optimal management of distressing symptoms, while incorporating psychosocial and spiritual support according to patient, family, and caregiver needs, values, beliefs, and cultures."¹ The goal is to anticipate, prevent, and reduce suffering — and to support the best possible quality of life — regardless of the stage of disease or the need for other therapies.¹

The key phrase is regardless of the stage of disease. Palliative care can — and ideally should — begin at the time of diagnosis and be delivered alongside all other cancer treatments, including surgery, radiation, chemotherapy, and immunotherapy.¹ ² It does not replace cancer treatment. It complements it.

Think of it this way: your oncologist focuses on treating the cancer. Your palliative care team focuses on treating you — the whole person — including your pain, your worries, your family's needs, and your quality of life.

Part 2: Palliative Care vs. Hospice — Understanding the Difference

One of the main reasons patients fear palliative care is that they confuse it with hospice. While related, they are fundamentally different.²

Palliative care:

• Can begin at any point after diagnosis — even at the very beginning
• Is provided alongside curative or life-prolonging treatments
• Focuses on symptom management, quality of life, and emotional support
• Is delivered by an interdisciplinary team (physicians, nurses, social workers, chaplains, psychologists)
• Can last for months or years
• Is available in hospitals, outpatient clinics, and at home
• Does not require giving up any treatment

Hospice care:

• Is specifically for patients with an estimated life expectancy of six months or less
• Under Medicare in the United States, patients generally agree to forgo curative treatments for their terminal illness
• Focuses entirely on comfort, dignity, and quality of remaining life
• Provides comprehensive services including medications, equipment, nursing, counseling, and volunteer support
• Is most commonly delivered at home, but can also be provided in hospice facilities, nursing homes, or hospitals
• Includes bereavement support for families for up to 13 months after the patient's death

A helpful way to remember: all hospice care is palliative, but not all palliative care is hospice.² ³

In the United States, the Medicare Hospice Benefit covers physician services, nursing, social work, home health aides, volunteers, physical and occupational therapy, counseling, spiritual care, medications related to the terminal illness, medical supplies and equipment, short-term inpatient and respite care, and bereavement follow-up.⁴

Part 3: The Landmark Study That Changed Everything

In 2010, Dr. Jennifer Temel and colleagues at Massachusetts General Hospital published a study in the New England Journal of Medicine that fundamentally changed how oncologists think about palliative care.⁵

The study enrolled 151 patients with newly diagnosed metastatic non-small-cell lung cancer. Half were randomly assigned to receive early palliative care integrated with standard oncology care; the other half received standard oncology care alone.⁵

The results were striking:⁵ ⁶

• Patients receiving early palliative care had significantly better quality of life (mean FACT-L score 98.0 vs. 91.5; p=0.03)
• Fewer patients in the palliative care group had depressive symptoms (16% vs. 38%; p=0.01)
• Despite receiving less aggressive end-of-life care (33% vs. 54%; p=0.05), patients receiving early palliative care lived significantly longer — median survival of 11.6 months vs. 8.9 months (p=0.02)

This last finding was perhaps the most remarkable: patients who received less aggressive treatment at the end of life actually lived nearly three months longer. The improvement in survival was comparable to what is typically seen with a new chemotherapy drug — yet it came from better symptom management, emotional support, and more appropriate use of cancer treatments.⁵ ⁶ ⁷

A follow-up analysis showed that early palliative care also helped patients develop a more accurate understanding of their prognosis over time (82.5% vs. 59.6%; p=0.02), and those with accurate prognostic awareness were less likely to receive chemotherapy near the end of life.⁸

While the survival benefit has not been consistently replicated across all cancer types,⁹ ¹⁰ the quality-of-life benefits have been confirmed repeatedly. A meta-analysis of 16 studies found that early palliative care improved quality of life, reduced symptoms, improved mood, and increased the probability of dying at home.¹¹ ASCO guidelines now recommend that patients with advanced cancer be referred to interdisciplinary palliative care teams early in the treatment process, alongside active cancer treatment.²

Part 4: What Does a Palliative Care Team Actually Do?

A palliative care team is an interdisciplinary group of professionals who work together to address all aspects of suffering — physical, emotional, social, and spiritual.¹ The team typically includes:

Palliative care physicians and advanced practice providers — Specialists trained in pain management, symptom control, and goals-of-care conversations. They work alongside your oncologist, not instead of them.

Nurses — Coordinate care, manage symptoms, educate patients and families, and serve as a consistent point of contact.

Social workers — Help with practical needs such as insurance navigation, financial assistance, transportation, home care services, and family dynamics.

Chaplains and spiritual care providers — Offer spiritual support regardless of religious background. They help patients explore questions of meaning, purpose, hope, and legacy.¹² ¹³

Psychologists and counselors — Provide therapy for anxiety, depression, grief, and adjustment to illness.

Pharmacists — Optimize medication regimens, manage drug interactions, and help with pain medication adjustments.

Rehabilitation specialists — Physical therapists, occupational therapists, and others who help maintain function and independence.

The NCCN recommends that all patients with cancer be screened for palliative care needs at their initial visit, at appropriate intervals, and as clinically indicated.¹ This screening should assess symptoms, functional status, psychosocial and spiritual distress, educational needs, cultural factors, financial toxicity, and advance care planning status.¹⁴

Part 5: Pain Management in Advanced Prostate Cancer

Pain is one of the most feared aspects of advanced cancer, and it is also one of the most treatable. No patient should suffer from uncontrolled pain. Yet studies consistently show that cancer pain is undertreated — not because effective treatments do not exist, but because patients may not report pain, doctors may not ask about it, or there may be fears about pain medications.¹⁵

Where does pain come from in advanced prostate cancer?

The most common source of pain in advanced prostate cancer is bone metastases. Prostate cancer has a strong tendency to spread to bones — the spine, pelvis, ribs, and hips are the most common sites. Bone metastases occur in over 90% of patients with metastatic prostate cancer over the course of their disease.¹⁶ Bone pain can range from a dull ache to severe, debilitating pain that interferes with sleep, walking, and daily activities.¹⁵

Other sources of pain include:

• Nerve compression or irritation from tumor growth
• Pain from treatments (surgery, radiation, medications)
• Muscle spasms related to bone or spine involvement
• Urinary obstruction
• Pathologic fractures (bones weakened by cancer that break)

The pain management ladder

Pain management follows a stepwise approach:¹⁷ ¹⁸

Step 1 — Mild pain:

• Acetaminophen (Tylenol)
• NSAIDs (ibuprofen, naproxen) — particularly effective for bone pain
• Topical agents (lidocaine patches)

Step 2 — Moderate pain:

• Mild opioids (tramadol, codeine) in addition to Step 1 medications
• Adjuvant medications as needed (see below)

Step 3 — Severe pain:

• Strong opioids (morphine, oxycodone, hydromorphone, fentanyl patches)
• These are given as long-acting (around-the-clock) medications with short-acting "breakthrough" doses available for pain spikes
• A bowel regimen (stool softener plus stimulant laxative) should always be started with opioids to prevent constipation¹⁷
• Anti-nausea medications may be needed initially

Adjuvant medications — These are drugs that are not primarily pain medications but help with specific types of pain:¹⁹

• Gabapentin or pregabalin — for nerve pain (burning, tingling, shooting pain)
• Duloxetine or venlafaxine — antidepressants that also treat nerve pain
• Corticosteroids (dexamethasone) — for pain from nerve compression, inflammation, or bone pain crises
• Bone-modifying agents (denosumab, zoledronic acid) — help prevent fractures and may reduce bone pain²⁰

A word about opioids: Many patients fear becoming "addicted" to pain medications. It is important to understand the difference between physical dependence (your body adjusts to the medication — this is normal and expected) and addiction (compulsive use despite harm — this is rare when opioids are used appropriately for cancer pain). Cancer pain is real, it is treatable, and you deserve to have it controlled. Do not suffer in silence.

Part 6: Palliative Radiation Therapy

Radiation therapy is one of the most effective tools for relieving cancer-related pain, particularly bone pain. When used for symptom relief rather than cure, it is called palliative radiation therapy.²¹

How it works for bone pain:

Radiation damages cancer cells in the bone, reducing the tumor's size and the inflammation it causes. Pain relief typically begins within 1–2 weeks and reaches its maximum effect by 4–6 weeks.

How many treatments are needed?

This is an important question because convenience matters enormously for patients with advanced cancer. Multiple large randomized trials and meta-analyses have shown that for uncomplicated painful bone metastases, a single treatment of 8 Gy is as effective for pain relief as longer courses such as 30 Gy in 10 treatments or 20 Gy in 5 treatments.²² ²³ ²⁴

The overall pain response rate is approximately 60–70% with either approach.²² The main difference is that single-fraction treatment has a slightly higher retreatment rate (about 18% vs. 9%), but this is offset by the enormous convenience of completing treatment in one visit.²² ²⁴ The ASTRO clinical practice guideline recommends single-fraction radiation as a standard option for uncomplicated bone metastases.²⁵

For more complex situations — such as spinal cord compression, large soft tissue masses, or tumors near critical structures — longer courses or stereotactic body radiation therapy (SBRT) may be preferred.²⁶

Other uses of palliative radiation in prostate cancer:

• Bleeding from the prostate or bladder
• Urinary obstruction
• Pain from lymph node enlargement
• Brain metastases (rare in prostate cancer)

Part 7: Spinal Cord Compression — A Medical Emergency

One complication that every prostate cancer patient with bone metastases should know about is metastatic spinal cord compression (MSCC). This occurs when cancer in the spine grows large enough to press on the spinal cord — the bundle of nerves that runs through the center of the spine and controls movement and sensation in the body.²⁷

Why is this an emergency?

If the spinal cord is compressed and not treated quickly, the damage can become permanent. This can result in paralysis (inability to move the legs), loss of bladder and bowel control, and severe pain. The key to a good outcome is early recognition and immediate treatment.²⁷ ²⁸

Warning signs — call your doctor immediately or go to the emergency room if you experience:

• New or rapidly worsening back pain, especially in the middle or upper back
• Pain that wraps around your chest or abdomen like a band
• Weakness or heaviness in your legs
• Numbness or tingling in your legs, feet, or around your groin/buttocks
• Difficulty walking or unsteadiness
• Loss of bladder or bowel control (new incontinence)

Treatment of spinal cord compression:²⁷ ²⁸ ²⁹

1. Steroids — Dexamethasone is started immediately (typically 10–16 mg as a bolus, sometimes higher) to reduce swelling around the spinal cord. This can provide rapid pain relief and prevent further neurological damage.
2. Surgery — For selected patients (life expectancy ≥3 months, good overall health, single site of compression), surgical decompression followed by radiation is the preferred approach. A landmark randomized trial showed that surgery plus radiation was superior to radiation alone for maintaining the ability to walk.²⁹
3. Radiation therapy — For patients who are not surgical candidates, radiation is the primary treatment. Common regimens include 20 Gy in 5 fractions or 30 Gy in 10 fractions. In some cases, 8 Gy in a single fraction may be appropriate.²⁶
4. Multidisciplinary evaluation — Treatment decisions should involve radiation oncologists, spine surgeons, and the oncology team working together.²⁸

The most important message: If you have prostate cancer with bone metastases and you develop new back pain with any leg weakness, numbness, or bladder/bowel changes, do not wait for your next appointment. This is a medical emergency. Go to the emergency room and tell them you have cancer and are concerned about spinal cord compression. An urgent MRI of the entire spine should be performed.²⁷ ²⁸

Part 8: Advance Care Planning — Your Voice, Your Choices

Advance care planning (ACP) is one of the most important — and most avoided — conversations in cancer care. It is the process of thinking about, discussing, and documenting your wishes for future medical care, especially for situations where you might not be able to speak for yourself.³⁰ ³¹

ACP is not about giving up. It is about taking control.

Research shows that ACP increases the likelihood that your care will match your wishes, reduces unwanted hospitalizations, increases the use of palliative care and hospice, improves patient and family satisfaction, and reduces family stress, anxiety, and depression.³⁰ ³¹ A study specifically in patients with advanced genitourinary cancers (including prostate cancer) found that integrating palliative care led to 100% of patients engaging in ACP (vs. 79% without palliative care), with ACP discussions occurring a median of 260 days before death rather than just 4.5 days.³²

Key components of advance care planning:³⁰ ³¹ ³³

1. Healthcare proxy / Power of attorney for healthcare

This is the person you designate to make medical decisions on your behalf if you become unable to make them yourself. Choose someone who:

• Knows your values and wishes
• Is willing to advocate for your preferences, even if they differ from their own
• Can handle difficult conversations and decisions under pressure
• Is available and reachable

2. Advance directive / Living will

This is a legal document that outlines your wishes for medical care in specific situations. It typically addresses:

• Whether you want CPR (cardiopulmonary resuscitation) if your heart stops
• Whether you want mechanical ventilation (a breathing machine)
• Whether you want artificial nutrition and hydration (feeding tubes, IV fluids)
• Your preferences for pain management
• Your wishes about hospitalization vs. staying at home

3. POLST / MOLST (Physician/Medical Orders for Life-Sustaining Treatment)

Unlike an advance directive (which is a general statement of wishes), a POLST is a medical order signed by your doctor that translates your wishes into specific, actionable instructions. It is particularly important for patients with serious illness and travels with you across care settings.³³

4. Goals-of-care conversations

These are ongoing discussions with your medical team about what matters most to you. They are not one-time events — your goals may change as your health changes. Questions to consider:

• What does a good day look like for me?
• What activities or experiences are most important to me?
• What am I willing to go through for the possibility of more time?
• What would make life not worth living for me?
• Where do I want to spend my final days?

When should you start advance care planning?

Now. Regardless of your stage of disease. ACP is recommended for all adults, not just those with advanced cancer.³⁰ The NCCN recommends that advance care planning be initiated early and revisited regularly as the patient's condition evolves.³³ Having these conversations when you are feeling well and thinking clearly is far better than waiting for a crisis.

Resources for advance care planning:

• PREPARE for Your Care (prepareforyourcare.org) — A free, interactive website available in English and Spanish that guides you through the ACP process. A randomized trial showed it significantly increased ACP documentation among diverse older adults with cancer.³⁴
• Five Wishes (fivewishes.org) — A widely used advance directive document written in everyday language
• The Conversation Project (theconversationproject.org) — Free resources to help start conversations about end-of-life wishes

Part 9: Goals-of-Care Conversations — What to Expect

Goals-of-care conversations can feel intimidating, but they are among the most important conversations you will ever have. Here is what to expect:³⁵

Your doctor may ask:

• "What is your understanding of where things stand with your cancer?"
• "What are your hopes? What are your worries?"
• "What is most important to you as we think about next steps?"
• "If your health were to get worse, what would be most important to you?"
• "Are there things you would not want done, even if they might give you more time?"

You might say:

• "I want to fight this as long as there are reasonable options."
• "Quality of life is more important to me than quantity."
• "I want to be at home with my family."
• "I do not want to be on machines."
• "I want to be comfortable and pain-free."
• "I need more time to think about this."

There are no wrong answers. These conversations are about your values, your priorities, and your life. Your medical team's job is to help you understand your options and then support whatever decisions you make.

Part 10: When Treatment Is No Longer Working

One of the most difficult moments in any cancer journey is when treatments stop working. This does not mean that nothing can be done — it means the focus of care shifts from trying to control the cancer to maximizing comfort, quality of life, and time with loved ones.³⁵ ³⁶

Signs that it may be time to reconsider the goals of treatment:

• Cancer is progressing despite multiple lines of therapy
• Side effects of treatment are significantly reducing quality of life
• Functional status is declining (spending more time in bed, needing more help with daily activities)
• Hospitalizations are becoming more frequent
• The oncologist discusses "running out of standard options"

What shifting goals does NOT mean:

• It does not mean you are being abandoned
• It does not mean nothing will be done
• It does not mean you will be in pain
• It does not mean you cannot change your mind

What shifting goals DOES mean:

• The focus moves to what matters most to you
• Symptom management becomes the top priority
• Hospice services become available to provide comprehensive support
• You may actually feel better because you are no longer experiencing treatment side effects

Part 11: Understanding Hospice Care

If your doctor recommends hospice, it means they believe your cancer is unlikely to respond to further treatment and that your life expectancy is approximately six months or less. This is not a precise prediction — some patients live longer than six months on hospice, and they can continue receiving hospice care as long as they still qualify.³ ⁴

What hospice provides:³ ⁴

• Medical care — A hospice physician and nurse manage your symptoms, adjust medications, and coordinate care. They are available 24/7 by phone.
• Medications — Hospice covers medications related to your terminal illness and comfort.
• Medical equipment — Hospital beds, wheelchairs, oxygen, and other supplies are provided.
• Nursing visits — Regular home visits by hospice nurses, with additional visits as needed.
• Home health aides — Help with bathing, dressing, and personal care.
• Social work — Assistance with practical, emotional, and financial needs.
• Chaplain services — Spiritual support for patients and families of all faiths (or no faith).
• Counseling — For patients and family members.
• Volunteer support — Companionship, respite for caregivers, and practical help.
• Bereavement support — Counseling and support for family members for up to 13 months after the patient's death.
• Respite care — Short-term inpatient care (up to 5 days) to give caregivers a break.

Where is hospice provided?

Most hospice care is provided at home — in the patient's own house or apartment, or in a family member's home. Hospice can also be provided in:

• Dedicated hospice facilities (hospice houses)
• Nursing homes or assisted living facilities
• Hospitals (for acute symptom management)

Common concerns about hospice:

"Will I still see my oncologist?"

You can still see your oncologist, though the focus of visits will shift to comfort rather than cancer treatment. Many oncologists continue to follow their patients on hospice.

"What if I get better?"

You can leave hospice at any time if your condition improves or if you decide to resume cancer treatment. You can also re-enroll later.

"Does hospice hasten death?"

No. Research consistently shows that hospice does not shorten life. In fact, some studies suggest that patients on hospice may live slightly longer than similar patients who do not enroll, possibly because of better symptom management and reduced complications from aggressive treatments.⁵

"Is hospice only for the last few days?"

Unfortunately, many patients are referred to hospice very late — sometimes just days before death. This is a missed opportunity. The full benefits of hospice — including emotional support, symptom management, and family preparation — are best realized when patients enroll weeks to months before death. The median hospice length of stay in the United States is approximately 18 days, but experts recommend earlier enrollment.⁴

Part 12: Spiritual Care and Finding Meaning

A cancer diagnosis — especially advanced cancer — often raises profound questions about meaning, purpose, faith, and legacy. Research shows that approximately 86–91% of patients with advanced cancer have spiritual needs, and addressing these needs is associated with better quality of life, less depression, and more appropriate end-of-life care.¹² ¹³ ³⁷

Spiritual care is not just for religious people. Whether you are deeply religious, spiritual but not religious, agnostic, or atheist, you may find yourself grappling with questions like:

• Why is this happening to me?
• What has my life meant?
• What will I leave behind?
• How do I find peace?
• What happens after death?

Spiritual care in the cancer setting may include:¹² ¹³ ³⁷

• Conversations with a chaplain or spiritual care provider
• Prayer, meditation, or mindfulness practices
• Connection with your faith community
• Exploring questions of meaning and purpose
• Dignity therapy — a structured conversation that creates a written document capturing your life story, values, and messages for loved ones
• Meaning-centered psychotherapy — a therapy specifically designed to help cancer patients find meaning and purpose³⁸
• Legacy projects — writing letters, recording videos, creating memory books, or other ways to leave something meaningful for your family

A study found that when patients' spiritual needs were supported by the medical team, they reported higher quality of life, received more hospice care, and were less likely to have burdensome interventions near the end of life.¹³

The NCCN recommends that spiritual and existential distress be assessed as part of comprehensive palliative care, and that patients be referred to chaplains or spiritual care providers when needs are identified.¹² ¹⁴

Part 13: Supporting Caregivers — The Hidden Patients

Behind every cancer patient is often a caregiver — a spouse, partner, adult child, sibling, or friend — who provides essential support while often neglecting their own needs. Caregivers are sometimes called "the hidden patients" because their physical and emotional health can suffer significantly.³⁹ ⁴⁰

What caregivers do:³⁹

• Provide daily practical assistance (transportation, meals, housekeeping)
• Help with physical care (bathing, dressing, medication management)
• Coordinate medical appointments and communicate with the healthcare team
• Provide emotional support and companionship
• Manage finances and insurance
• Serve as advocates in medical settings

The toll of caregiving:

A meta-analysis of 49 randomized trials involving over 8,500 caregivers of patients with advanced cancer found significant impacts on caregiver quality of life, mental well-being, anxiety, and depression.⁴⁰ Caregiver burden can manifest as:

• Exhaustion and physical health problems
• Anxiety and depression
• Social isolation
• Financial strain
• Difficulty sleeping
• Feelings of guilt, helplessness, or resentment
• Neglect of their own medical care

What helps caregivers:⁴⁰ ⁴¹ ⁴²

Research shows that interventions targeting caregivers can significantly improve their quality of life and mental health. Effective approaches include:

• Psychoeducation combined with skills training — Learning about the disease, symptom management, stress management, and coping strategies
• Therapeutic counseling — Individual or group therapy focused on caregiver-specific challenges
• Support groups — Connecting with other caregivers who understand the experience
• Respite care — Temporary relief from caregiving duties, allowing the caregiver to rest
• Practical support — Help with transportation, meals, housekeeping, and errands
• Telehealth and phone support — Accessible support that does not require leaving the patient⁴¹

The NCCN recommends that caregivers' physical and mental well-being be periodically assessed, that their willingness and ability to provide care be evaluated, and that they be connected with appropriate support services.³⁹ Validated tools such as the Zarit Burden Interview can help identify caregivers who are struggling.³⁹

A message to caregivers: You cannot pour from an empty cup. Taking care of yourself is not selfish — it is essential. If you are struggling, please reach out. Ask your loved one's oncology team about caregiver support services. Join a support group. Accept help when it is offered. And remember: you are not alone.

Part 14: Bereavement — Supporting Those Left Behind

Grief does not begin at the moment of death. For many families, grief begins the moment they learn the cancer is incurable — this is called anticipatory grief. It is normal, it is painful, and it deserves support.

What to expect:

• Sadness, anger, fear, guilt, and relief can all coexist — and all are normal
• Grief is not linear — it comes in waves
• There is no "right" way to grieve
• Children and adolescents grieve differently from adults and may need age-appropriate support

Bereavement support:¹ ¹⁴ ⁴³

• Hospice programs provide bereavement support for families for up to 13 months after the patient's death
• Grief counseling (individual or group)
• Support groups for bereaved spouses, partners, and family members
• Spiritual care and chaplain services
• Online communities and resources

The NCCN recommends that families be periodically assessed for risk factors associated with complicated grief, and that bereavement programs maintain contact with bereaved family members after the patient's death.¹⁴ ⁴³

When grief needs professional help:

Most grief, while painful, resolves naturally over time. However, some people develop complicated grief (also called prolonged grief disorder), which is characterized by:

• Intense longing or yearning that does not diminish over months
• Difficulty accepting the death
• Inability to engage in daily activities or relationships
• Feeling that life has no meaning or purpose
• Persistent bitterness or anger about the death

If grief is interfering with daily functioning for more than six months, professional help from a grief counselor, psychologist, or psychiatrist should be sought.

Part 15: Cultural Sensitivity in End-of-Life Care

Different cultures, religions, and communities have different beliefs and practices around illness, death, and dying. Good palliative care respects and honors these differences.¹ ¹⁴

Examples of cultural considerations:

• Some cultures prefer that the family, not the patient, receive prognostic information
• Some religions have specific rituals or practices around death and dying
• Attitudes toward pain medication, autopsy, organ donation, and cremation vary widely
• The role of family in decision-making differs across cultures
• Language barriers can complicate communication — professional medical interpreters (not family members) should be used

The NCCN recommends that palliative care be culturally congruent and that healthcare teams assess and respect cultural factors affecting care.¹ ¹⁴ If you have specific cultural or religious needs, please share them with your medical team — they want to honor your wishes.

Questions to Ask Your Doctor

1. Can I be referred to a palliative care team even though I am still receiving treatment?
2. What palliative care services are available at this center?
3. How can we better manage my pain?
4. Should I consider hospice? What would that look like?
5. Can you help me understand my prognosis so I can plan?
6. Who can help me with advance care planning?
7. Are there support services available for my caregiver/family?
8. Can I see a chaplain or spiritual care provider?
9. What are the warning signs of spinal cord compression?
10. If I enroll in hospice, can I change my mind later?

Myth vs. Fact

• Myth: "Palliative care means giving up." → Fact: Palliative care is provided alongside active cancer treatment and can begin at diagnosis. It focuses on quality of life, not giving up.
• Myth: "Hospice means you will die within days." → Fact: Hospice is for patients with an estimated life expectancy of six months or less, and many patients live longer. Earlier enrollment allows more benefit.
• Myth: "Pain medications will make me addicted." → Fact: When used appropriately for cancer pain, opioids rarely cause addiction. Untreated pain is far more harmful than properly managed pain medication.
• Myth: "Talking about death will make it happen sooner." → Fact: Advance care planning does not hasten death. It ensures your wishes are known and respected, reducing stress for you and your family.
• Myth: "Hospice is only for the last few days." → Fact: Patients benefit most when enrolled weeks to months before death. Late referral is a missed opportunity for comprehensive support.
• Myth: "Strong people do not need help with grief." → Fact: Grief is a universal human experience. Seeking support is a sign of strength, not weakness.

Key Takeaways

1. Palliative care is not hospice — it can and should begin early, alongside active cancer treatment, to improve quality of life and manage symptoms.
2. Pain is treatable — no patient should suffer from uncontrolled pain. A stepwise approach using medications, radiation, and other techniques can effectively manage most cancer pain.
3. Spinal cord compression is a medical emergency — new back pain with leg weakness, numbness, or bladder/bowel changes in a patient with bone metastases requires immediate evaluation.
4. Advance care planning is empowering — documenting your wishes ensures your voice is heard even when you cannot speak for yourself. Start now, regardless of your stage of disease.
5. Caregivers need care too — the physical and emotional toll of caregiving is real. Support services, respite care, and counseling can make an enormous difference. Do not wait until you are overwhelmed to ask for help.

Support Resources

Palliative Care:

• GetPalliativeCare.org — A directory to find palliative care programs near you, plus educational resources for patients and families
• Center to Advance Palliative Care (CAPC) — capc.org — Information about palliative care availability and quality
• National Hospice and Palliative Care Organization (NHPCO) — nhpco.org — Education, advocacy, and provider directory

Hospice:

• Hospice Foundation of America — hospicefoundation.org — Education and resources about hospice care
• NHPCO Hospice Locator — nhpco.org/find-hospice — Search for hospice programs by location
• Medicare Hospice Benefits — medicare.gov — Detailed information about what Medicare covers under the hospice benefit

Advance Care Planning:

• PREPARE for Your Care — prepareforyourcare.org — Free, step-by-step advance care planning tool (English and Spanish)
• Five Wishes — fivewishes.org — A widely used, easy-to-understand advance directive document
• The Conversation Project — theconversationproject.org — Free starter kits to help begin goals-of-care conversations
• National POLST — polst.org — Information about Physician Orders for Life-Sustaining Treatment by state

Pain Management:

• American Cancer Society Pain Resource Center — cancer.org — Guides on managing cancer pain
• National Cancer Institute Pain PDQ — cancer.gov — Comprehensive information on cancer pain management

Grief and Bereavement:

• GriefShare — griefshare.org — Support groups for people grieving the loss of a loved one
• The Dougy Center — dougy.org — Grief resources specifically for children and teens
• National Alliance for Grieving Children — childrengrieve.org — Resources for families with grieving children
• Open to Hope — opentohope.com — Online community and resources for those who have experienced loss

Caregiver Support:

• National Alliance for Caregiving — caregiving.org — Research, advocacy, and resources for family caregivers
• Caregiver Action Network — caregiveraction.org — Education, peer support, and a caregiver help desk
• Family Caregiver Alliance — caregiver.org — Information, services, and an online support group
• AARP Caregiving Resource Center — aarp.org/caregiving — Practical tools and guides for caregivers

Crisis Support:

• 988 Suicide and Crisis Lifeline — Call or text 988 (available 24/7)
• Crisis Text Line — Text HOME to 741741
• Cancer Support Community Helpline — 1-888-793-9355

References

1. 1. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Palliative Care, Version 2.2026.
2. 2. 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. J Clin Oncol 2017;35(1):96–112.
3. 3. National Hospice and Palliative Care Organization. NHPCO Facts and Figures, 2024 Edition.
4. 4. Centers for Medicare & Medicaid Services. Medicare Hospice Benefits. CMS Publication No. 02154.
5. 5. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non–[small-cell lung cancer](/rare-disease/small-cell-lung-cancer). N Engl J Med 2010;363(8):733–742.
6. 6. Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non–small-cell lung cancer. J Clin Oncol 2012;30(4):394–400.
7. 7. Pirl WF, Greer JA, Traeger L, et al. Depression and survival in metastatic non–small-cell lung cancer: effects of early palliative care. J Clin Oncol 2012;30(12):1310–1315.
8. 8. Temel JS, Greer JA, Admane S, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non–small-cell lung cancer. J Clin Oncol 2011;29(17):2319–2326.
9. 9. Bakitas MA, Tosteson TD, Li Z, et al. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the ENABLE III randomized controlled trial. J Clin Oncol 2015;33(13):1438–1445.
10. 10. Zimmermann C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet 2014;383(9930):1721–1730.
11. 11. Haun MW, Estel S, Rücker G, et al. Early palliative care for adults with advanced cancer. Cochrane Database Syst Rev 2017;6:CD011129.
12. 12. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Distress Management, Version 2.2026.
13. 13. Balboni TA, Paulk ME, Balboni MJ, et al. Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. J Clin Oncol 2010;28(3):445–452.
14. 14. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Palliative Care — Principles of Palliative Care, Version 2.2026.
15. 15. van den Beuken-van Everdingen MH, Hochstenbach LM, Joosten EA, et al. Update on prevalence of pain in patients with cancer: systematic review and meta-analysis. J Pain Symptom Manage 2016;51(6):1070–1090.
16. 16. Gandaglia G, Abdollah F, Schiffmann J, et al. Distribution of metastatic sites in patients with prostate cancer: a population-based analysis. Prostate 2014;74(2):210–216.
17. 17. World Health Organization. WHO Guidelines for the Pharmacological and Radiotherapeutic Management of Cancer Pain in Adults and Adolescents. Geneva: WHO; 2018.
18. 18. Paice JA, Portenoy R, Lacchetti C, et al. Management of chronic pain in survivors of adult cancers: American Society of Clinical Oncology clinical practice guideline. J Clin Oncol 2016;34(27):3325–3345.
19. 19. Fallon M, Giusti R, Aielli F, et al. Management of cancer pain in adult patients: ESMO clinical practice guidelines. Ann Oncol 2018;29(Suppl 4):iv166–iv191.
20. 20. Fizazi K, Carducci M, Smith M, et al. Denosumab versus zoledronic acid for treatment of bone metastases in men with castration-resistant prostate cancer: a randomised, double-blind study. Lancet 2011;377(9768):813–822.
21. 21. Lutz S, Balboni T, Jones J, et al. Palliative radiation therapy for bone metastases: update of an ASTRO evidence-based guideline. Pract Radiat Oncol 2017;7(1):4–12.
22. 22. Chow E, Zeng L, Salvo N, et al. Update on the systematic review of palliative radiotherapy trials for bone metastases. Clin Oncol (R Coll Radiol) 2012;24(2):112–124.
23. 23. Hartsell WF, Scott CB, Bruner DW, et al. Randomized trial of short- versus long-course radiotherapy for palliation of painful bone metastases. J Natl Cancer Inst 2005;97(11):798–804.
24. 24. Rich SE, Chow R, Raman S, et al. Update of the systematic review of palliative radiation therapy fractionation for bone metastases. Radiother Oncol 2018;126(3):547–557.
25. 25. Lutz S, Berk L, Chang E, et al. Palliative radiotherapy for bone metastases: an ASTRO evidence-based guideline. Int J Radiat Oncol Biol Phys 2011;79(4):965–976.
26. 26. Sahgal A, Myrehaug SD, Siva S, et al. Stereotactic body radiotherapy versus conventional external beam radiotherapy in patients with painful spinal metastases: an open-label, multicentre, randomised, controlled, phase 2/3 trial. Lancet Oncol 2021;22(7):1023–1033.
27. 27. Loblaw DA, Perry J, Chambers A, et al. Systematic review of the diagnosis and management of malignant extradural spinal cord compression: the Cancer Care Ontario Practice Guidelines Initiative's Neuro-Oncology Disease Site Group. J Clin Oncol 2005;23(9):2028–2037.
28. 28. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Central Nervous System Cancers — Metastatic Spine Tumors, Version 1.2026.
29. 29. Patchell RA, Tibbs PA, Regine WF, et al. Direct decompressive surgical resection in the treatment of spinal cord compression caused by metastatic cancer: a randomised trial. Lancet 2005;366(9486):643–648.
30. 30. Sudore RL, Lum HD, You JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage 2017;53(5):821–832.
31. 31. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 2014;28(8):1000–1025.
32. 32. Rabow MW, Benner C, Enguidanos S, et al. Palliative care integration in genitourinary oncology: a randomized clinical trial. J Clin Oncol 2023;41(16 Suppl):5064.
33. 33. National POLST. POLST: Portable Medical Orders. polst.org. Accessed 2026.
34. 34. Sudore RL, Boscardin J, Feuz MA, et al. Effect of the PREPARE website vs an easy-to-read advance directive on advance care planning documentation and engagement among veterans: a randomized clinical trial. JAMA Intern Med 2017;177(10):1102–1109.
35. 35. Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 2014;174(12):1994–2003.
36. 36. Mack JW, Cronin A, Taback N, et al. End-of-life care discussions among patients with advanced cancer: a cohort study. Ann Intern Med 2012;156(3):204–210.
37. 37. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med 2009;12(10):885–904.
38. 38. Breitbart W, Rosenfeld B, Pessin H, et al. Meaning-centered group psychotherapy for patients with advanced cancer: a pilot randomized controlled trial. Psychooncology 2010;19(1):21–28.
39. 39. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Distress Management — Caregiver Assessment, Version 2.2026.
40. 40. Ahn S, Romo RD, Campbell CL. A systematic review of interventions for family caregivers who care for patients with advanced cancer at home. Patient Educ Couns 2020;103(8):1518–1530.
41. 41. Northouse LL, Katapodi MC, Song L, et al. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin 2010;60(5):317–339.
42. 42. Applebaum AJ, Breitbart W. Care for the cancer caregiver: a systematic review. Palliat Support Care 2013;11(3):231–252.
43. 43. Shear MK, Simon N, Wall M, et al. Complicated grief and related bereavement issues for DSM-5. Depress Anxiety 2011;28(2):103–117.