Introduction:
Having open, honest, and ongoing conversations about end-of-life care preferences is incredibly important for dementia patients and families.
However, broaching this sensitive topic can also feel uncomfortable or awkward. Use these tips to thoughtfully facilitate necessary discussions focused on providing comfort, maintaining dignity, and respecting final wishes.
Pick the Right Time and Place:
Timing is key when initially raising end-of-life care with your loved one. Avoid having the conversation during a medical crisis or when your loved one is rushed, irritated, or upset.
Instead, wait for a calm moment when you are both relaxed and alone together, even if it’s just a brief discussion.
Listen Without Judgement:
- Let your loved one speak freely and don’t interrupt or negate their feelings.
- Ask gentle, open-ended questions to draw out their priorities and values without leading them.
- Seek to understand their perspectives on end-of-life care, even if different than yours. Listen with compassion.
Share Difficult Information Gradually and Gently:
- Explain prognosis, disease progression, and life expectancy in simple, clear terms at a pace your loved ones can absorb.
- Describe palliative and hospice care options matter-of-factly without overwhelming them.
- Pause often to gauge reactions and allow questions. Adjust the discussion based on their needs and readiness.
Make Comfort and Quality of Life the Central Focus:
Emphasize your commitment to providing maximum comfort, protecting dignity, and maintaining the best quality of life possible, especially at the end of life.
Assure your loved one you will thoughtfully honour their treatment preferences. Alleviating pain and suffering should be the top priority.
Include Other Close Family Members as Appropriate:
Having immediate family participate in discussions can help spark important conversations.
Differing perspectives may surface when adult children or siblings are involved. Schedule a time when the key family can participate without outside distractions or interruptions.
Be Prepared to Revisit the Topic Periodically:
- Preferences for medical treatments and end-of-life care may evolve and change over time as dementia progresses.
- Check-in regularly to see if your loved one has any new thoughts, concerns or questions.
- But don’t pressure them to continue talking if they become upset, withdrawn, or tune out.
Consult Healthcare Professionals for Guidance:
Doctors, nurses, social workers, and clergy can help guide end-of-life care discussions. They can explain key medical considerations in plain terms and describe hospice/palliative care options clearly.
Professionals can also answer pressing questions weighing on your loved one’s mind.
Conclusion:
Facilitating multiple open, caring conversations over time demonstrates profound love and compassion for your family member with dementia.
Even brief discussions of end-of-life preferences help ensure your loved one’s last days are kept as comfortable, dignified, and meaningful as possible.