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End-of-life conversations: start at the beginning

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End-of-life conversations: start at the beginning

Patients and their caregivers can use the recently published A Family Dignity Intervention Journey: Our Lasting Legacy to create their own legacy document.

Did you know that the most important and meaningful stories in our lives are actually our own? The ones that were created since the day we were born, continued as we walk through life, and shared with special people we meet along the way. 

Sometimes, painful events such as the diagnosis of a serious illness can seem to consume our entire lives. As patients, we may feel overwhelmed by the daily physical discomfort, and the emotional rollercoaster of uncertainty, hope and fear that accompany our illnesses. As family caregivers, we may feel completely absorbed by our caregiving responsibilities, while coping with the tiredness that comes with our devoted acts of caregiving. On top of all these, we are asked to participate in end-of-life care conversations, such as Advance Care Planning or Lasting Power of Attorney, something many of us had never even thought about before the illness. Suddenly, our present lives seem to revolve solely around the illness and its repercussions; the ‘good old days’ feel like a distant memory, or even a figment of our imagination.

 

But we are not just ‘the patient’. We are not just ‘the caregiver’. 

We are unique individuals with wonderful stories to tell. We are spouses, children, siblings, parents and friends. We have loved and lost, given and received, dreamed and accomplished, failed and learned. Most importantly, we have shared these precious experiences and memories with some special people in our lives. All of these cannot be undermined by the presence of a life-threatening illness. 

Family Dignity Intervention – Creating Lasting Legacies

Associate Professor Andy Ho and his team at the Action Research for Community Health (ARCH) Lab designed the Family Dignity Intervention (FDI) in 2017 to facilitate valuable conversations between patients and family caregivers, with the goal of deepening emotional connections, creating lasting legacies and paving the way for end-of-life discussions. The FDI is conducted by a trained therapist who delves into an exploration of recollections, life accomplishments, words of wisdom and expressions of appreciation between patients and their family caregiver. This interview is later transformed into a ‘legacy document’ — an edited and personalised copy of the interview transcript that is designed like an autobiography — and given to patients and their families. Last year, the team published A Family Dignity Intervention Journey: Our Lasting Legacy, a book with activities based on the FDI for patients and caregivers to create their own legacy document. This book has been distributed to local hospices, hospital palliative care units and intermediate long-term care facilities (ILTC) such as nursing homes. An interactive web version of the book is also underway. 

A/Prof Andy Ho observes that a significant feature of the FDI is that while the interview questions did not ask about end-of-life care planning, many patients and caregivers brought up these topics organically during the interview. 

“When they have the opportunity to first recall shared memories from childhood to adulthood and think about what they have accomplished and learned in life, they begin to reflect also on what they would like for themselves and their loved ones in the future. The FDI provides a gentle and empowering way of inviting patients and caregivers into these difficult but crucial conversations.”

Start at the Beginning
Mr. Ahmed*, a patient who had received Family Dignity Intervention, once wisely declared, “If someone does not ask about your life, how can they ask about your death?” 

Indeed, end-of-life care conversations must begin from a place of love and concern, and not simply from a place of urgent necessity. Whether or not we are in a hurry to acquire or convey final wishes and plans for the very end, we should always remember to start at the beginning. Based on the FDI interview, patients, family caregivers and healthcare professionals can embark on a meaningful storytelling journey with such questions:

1. Tell me about your childhood. What are some of the important and memorable times in your life? 

2. How has your relationship with your loved one influenced your life?

3. What do you think are your most meaningful accomplishments in life?

4. What do you think your loved one is most proud of you for?

5. What do you appreciate most about your loved one?

6. What would you like to thank your loved one for? 

7. Are there any words of wisdom or advice that you would like to offer to your family?

8. What are your hopes and dreams for yourself, and your loved ones?

9. What are some things you would want your loved one to know about you, or to remember about you?

In bringing back old memories, new and cherished ones are made. In expressing appreciation and love, family bonds are rekindled. In talking about our lives, we pave the way to reflections about our death. The end-of-life conversation must be dignifying, empowering and meaningful; perhaps a lasting legacy and a story in itself.

After all, life is a gift to us, and sharing our life stories can be our gift to the ones we love.  

*Name has been changed for confidentiality

 

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