What Patients Have Taught Me: Insights from End-of-Life Care
Published by Age Well, Die Well · Wednesday 05 Feb 2025 · 2:45
## Introduction
In my years of practice, I've made it a point to ask my patients about their experience of dying - a question many report has never been asked of them before. Their candid responses have revealed profound insights into the nature of death and dying, challenging common assumptions about end-of-life care.
## The Reality of Physical Pain
Physical pain emerged as the primary concern, but in ways more complex than typically understood:
- Patients fear not just the pain itself, but the prospect of never being free from it
- The exhaustion of cycling through ineffective treatments weighs heavily
- Many express that they don't want to die while experiencing uncontrolled pain
- Current pain management often results in brief periods of unconsciousness followed by awakening to pain
- One patient poignantly described being "paralyzed by the fear of making my pain worse if I move"
## The Burden of Emotional Pain
The emotional aspects of dying often rival physical discomfort:
- Many patients express more concern about the duration of dying than death itself
- The loss of dignity and independence causes significant distress
- Patients struggle with feeling like a burden to their families
- Many experience guilt about the impact of their illness on loved ones
- Some have shared that they wish they could apologize for getting sick
## Common Misconceptions and Patient Wishes
Several recurring themes emerged about what patients actually want versus what others assume:
- Many don't want to be forced to eat, drink, or get out of bed
- Patients often welcome visitors and expressions of love, even if typically private people
- Reports of visions or presence of deceased loved ones are common and usually comforting
- Most patients want acknowledgment that they made a difference in life
- Many wish for more control over their final days
## Recommendations for Better Care
### Physical Care
- Always warn patients before touching or moving them
- Avoid unnecessary vital sign checks during active dying
- Maintain privacy during personal care
- Consider the actual benefit of repositioning versus potential discomfort
- Assess vital signs visually when possible to minimize disturbance
### Communication
- Avoid asking "How are you?" - instead, use phrases like "It's nice to see you"
- Listen to patients' wishes about their care preferences
- Acknowledge and respect their autonomy
- Create space for conversations about their visions or experiences
- Allow them to express their fears and concerns
### Emotional Support
- Recognize that each person's death is unique
- Provide opportunities for meaningful goodbyes
- Support both patient and family emotional needs
- Respect the patient's wishes even when they conflict with family desires
- Acknowledge their right to refuse treatment or care
## Conclusion
The key to providing excellent end-of-life care lies in treating each patient as an individual with unique needs and experiences. While there are common threads in the dying experience, the only universal constants should be:
- Kindness
- Compassion
- Respect
- Honesty
Most importantly, we must remember that this is the patient's experience, not ours. Our role is to support and comfort while respecting their wishes and maintaining their dignity through the end of life.
Smiles,
Sheri