Palliative care planning

Palliative care is specialized medical care focused on providing relief from the symptoms, pain, and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.

62 steps across 12 sections

1. Talk to Your Doctor

  • Ask your primary care physician or specialist: "Would palliative care help me?"
  • You can request a palliative care referral at any point in your illness
  • You do not need to be "sick enough" — early referral provides the most benefit
  • Your doctor may also proactively suggest palliative care

2. Find a Palliative Care Provider

  • Hospital-based palliative care teams: Most large hospitals have palliative care consultation teams. Ask the hospital staff for a palliative care referral during any hospitalization
  • Outpatient palliative care clinics: Standalone or attached to hospitals and cancer centers; provide ongoing palliative care through regular appointments
  • Home-based palliative care: Some providers offer palliative care visits in the patient's home
  • Provider directory: The Center to Advance Palliative Care (CAPC) maintains a searchable directory at GetPalliativeCare.org

3. Initial Consultation

  • The palliative care team conducts a comprehensive assessment:
  • Physical symptoms (pain, nausea, fatigue, breathing difficulties)
  • Emotional and psychological wellbeing (anxiety, depression, fear)
  • Spiritual needs and concerns
  • Social and practical needs (financial, legal, caregiver support)
  • Goals of care and treatment preferences
  • Based on the assessment, the team develops a personalized care plan

4. Ongoing Care Coordination

  • The palliative care team works alongside your existing doctors (does not replace them)
  • Regular follow-up visits to adjust the care plan as needs change
  • Communication between palliative care team, specialists, and primary care physician
  • 24/7 phone support with many palliative care programs

5. Reassess and Adapt

  • As the illness progresses or improves, the care plan is updated
  • Treatment goals may shift over time (from curative to comfort-focused, or vice versa)
  • If the patient's condition becomes terminal, palliative care can transition seamlessly into hospice care

6. Serious Illnesses

  • Cancer (any type or stage)
  • Heart failure / advanced heart disease
  • Chronic obstructive pulmonary disease (COPD)
  • Kidney disease / renal failure
  • Liver disease / cirrhosis
  • Neurological conditions (ALS, Parkinson's, multiple sclerosis, dementia/Alzheimer's)
  • Sickle cell disease

7. Who Should Consider Palliative Care

  • Patients with symptoms that are difficult to control (pain, nausea, fatigue, shortness of breath, anxiety, depression)
  • Patients facing complex treatment decisions
  • Patients with multiple serious conditions
  • Patients who have been hospitalized multiple times for the same condition
  • Family members who need support in caregiving roles
  • Anyone who wants to improve their quality of life while managing a serious illness

8. Symptom Management

  • Pain: Medication management (opioids, non-opioid analgesics, nerve blocks, adjuvant therapies), physical therapy, complementary approaches
  • Nausea and vomiting: Anti-emetic medications, dietary modifications
  • Fatigue: Energy conservation strategies, activity pacing, medication adjustments
  • Shortness of breath (dyspnea): Medications, breathing techniques, oxygen therapy, fan therapy
  • Anxiety and depression: Counseling, medication, relaxation techniques, mindfulness
  • Sleep disturbances: Sleep hygiene education, medication management
  • Appetite loss and weight changes: Nutritional counseling, appetite stimulants
  • Constipation: Bowel regimen management (common side effect of pain medications)

9. Emotional and Psychological Support

  • Individual counseling for patient
  • Family counseling and communication facilitation
  • Support for children and adolescents in the family
  • Referral to mental health specialists when needed
  • Support groups and peer connections

10. Spiritual Care

  • Chaplain visits (non-denominational, respects all belief systems)
  • Exploration of meaning, purpose, and legacy
  • Connection with religious or spiritual communities if desired
  • Support with existential distress

11. Care Coordination

  • Communication between multiple specialists and the primary care team
  • Help navigating the healthcare system
  • Assistance with insurance and financial concerns
  • Coordination of home care services
  • Transition planning (hospital to home, curative to hospice)

12. Advance Care Planning

  • Discussion of goals, values, and treatment preferences
  • Completion of advance directives (living will, healthcare power of attorney)
  • POLST / MOLST (Physician/Medical Orders for Life-Sustaining Treatment) completion
  • Family communication about wishes
  • Regular reassessment as illness progresses

Common Mistakes

  • Confusing palliative care with hospice
  • Waiting until the end to seek palliative care
  • Not asking your doctor about it
  • Assuming it replaces your current doctors
  • Neglecting emotional and spiritual needs

Pro Tips

  • Ask for palliative care at diagnosis
  • Use the CAPC provider directory
  • Bring a list of symptoms to your first visit
  • Designate a healthcare proxy NOW
  • Keep a symptom journal

Sources

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