Whatever happens, stay alive.
Don’t die before you’re dead.
Don’t lose yourself, don’t lose hope,
don’t lose direction.
—Author unknown
Shortly after my lung cancer diagnosis in 2018, I (Angus) had an experience that made me very aware of the value of palliative care: My wife was diagnosed with pancreatic cancer, and 6 weeks later, she was dead.
Two weeks before her death, she was hospitalized to place a stent. A palliative care team—including a palliative care doctor, pharmacist, nurse, and social worker—provided excellent information and moved quickly to manage symptoms as they arose.
In hindsight, this group could have been involved much sooner. Unfortunately, like many people, I pictured the “death squad” when I thought of palliative care. Our fear of admitting that we would be managing dying slowed that process down. Now I think of that time as my “crash course in palliative care.”
That began my interest in palliative care for myself. For several years, each time I met with my oncologist I would ask if it was time to engage palliative care. He would chuckle and say “not yet.”
So, let’s talk about what palliative care is. And let’s be clear, palliative care is not synonymous with hospice care or imminent terminal care.
The World Health Organization defines palliative care as “an approach that improves the quality of life of patients (adults and children) and their families facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial, or spiritual.”
Science supports the efficacy of such an approach. A 2010 study by Jennifer Temel, MD, showed that pre-emptive palliative care was significantly more effective than current standard oncology care—not only improving quality of life but also extending it.1
Unfortunately, palliative care has an image problem.
Far from being the “death squad,” supportive care, as it is coming to be called, focuses on pain and symptom management. Palliative care teams help patients maintain a better quality of life despite the harsh realities of treatment and disease progression.
During a 2024 presentation of her more recent work, Dr. Temel said “despite the evidence for early palliative care improving outcomes, it has not been widely implemented in part due to palliative care workforce limitations.”2
As patients, we believe another significant barrier is the widespread misunderstanding of palliative care. Patients are often reluctant to ask for this assistance; some may fear it signals an admission that death is nigh or that it is a sign of personal weakness.
It is important for patients to understand the role of palliative care and the benefits and recommendations that a palliative care team can offer:
- Symptom management
- Emotional and psychosocial support
- Counselling
- Family support
- Spiritual care
- Support groups
- Advance care planning
- Goals discussions
- Advance directives
- Hospice referral
- Nutrition and hydration
- Coordination of care
- Multidisciplinary team communication
- Caregiver training
- Monitoring and treatment adjustments
- Integrative therapies
- Complementary medicine
Most oncologists are unable to provide this level of information. They either lack the expertise or the time. However, early engagement with the evidence-based palliative care strategies3,4,5 outlined above can vastly improve quality of life for patients with advanced lung cancer.
A great source to guide the medical community in these discussions is the Vital Talk Guide on transitions and goals of care, which offers practical advice for facilitating meaningful conversations with patients and their families. The medical community plays a crucial role in helping patients understand that palliative care is not about giving up—it is about living as well as possible for as long as possible.
References
- 1. 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
- 2. Temel JS, Jackson VA, El-Jawahri A, et al. Stepped Palliative Care for Patients With Advanced Lung Cancer: A Randomized Clinical Trial. JAMA. 2024;332(6):471-481. doi:10.1001/jama.2024.10398
- 3. Ishmael A. Jaiyesimi et al., Therapy for Stage IV Non–Small Cell Lung Cancer Without Driver Alterations: ASCO Living Guideline, Version 2023.3. JCO 42, e23-e43(2024). DOI:10.1200/JCO.23.02746
- 4. Choosing care and treatment for advanced cancer
- 5. Care at the End of the Life for Advanced Cancer Patients
