What led you to write this book?
In the Spring of 2012, my father faced the end of his life. Consciously and courageously, he encouraged each of his children to engage in some very direct dialogue, asking us for completion and readiness for his release. My dad was himself a writer of memoirs in his later years, and in those moments of drawing near to death, he encouraged me to write about the process and to share our story. Several weeks after his passing, in some very intense moments of grief, I experienced significant benefit from journaling about the painful process of acceptance and integration of my father’s physical absence from my life. I continued to write and write, primarily to help myself feel better, and produced a short story of the journey of his end of life from my perspective. Honoring my dad’s suggestion, I published a little book to share with others.
What could you draw from your experience to give advice to others going through this experience of losing a loved one?
The greatest advice I can possibly give is to be ready to be-with the dying and the bereaved. Being present and open to this new experience was the greatest gift I could give to myself and to my father. Although there is great pain inherent in loss, it is also possible to find unexpected humor, deep connection, healing of past wrongs and loving support of all kinds– from within yourself and from others in your circle of old and new acquaintances.
My family benefitted from the provision of hospice support, from knowing that highly trained and caring professionals were standing by and assisting at every turn of the road. As I mentioned, I found writing about my experience and my feelings to be quite helpful, and I recommend that to others. Let others in your support circle(s) know what you need and acknowledge those needs to yourself, then take and give as needed.
What could hospice, palliative care and medical professionals learn from your story?
Within each family there may be individuals whose relationship with the dying, and with each other, is at a wholly different place. Accepting that there is such great variation, and being non-judgmental while offering appropriate guidance and support to each person is of great benefit. I appreciated the sensitive and inclusive way all within our blended family were treated. As for the medical professionals, I wrote about one scenario in my book that significantly impacted my dad in particular: the sharing of the “there is nothing more we can do for you” end of life news. The team of physicians who cared for him very expertly in every other way did not handle the conveyance optimally. I believe this was an honest error born of the assumption that we had already been told, and I felt some compassion for the doctor who was in that unfortunate role. Nonetheless, my father was stunned, as was I, by the news being shared as abruptly as it was. So, I would recommend to others that they discern with a gentle question or two what a patient knows before jumping into such a conversation with both feet.
In your opinion, why is it important for patients’ and caregivers’ voices to be taken into account when making decisions around end of life issues?
In a word: Dignity. If all medical and emotional concerns can be voiced and acknowledged – including pertinent history, environmental preferences and the actual scenario of dying – then it is far more likely that all parties will succeed at providing the best care through all the necessary choices. Having choice in all matters that can be chosen creates the most possible dignity and peace, in my opinion. When that process is a shared one, there is unity of purpose and support as well as greater acceptance of the inevitable.
What more could be done to ensure these voices are heard?
Ask and ask again. Listen with patience and compassion. Affirm generously. Confirm that each decision is truly understood before moving forward. Remember always that most people are not trained in medical, psychological or spiritual matters. They may have fears, doubts and infinite possible misunderstandings.
Keep communications to each person involved, whether the dying or the bereaved, simple enough that a young child could understand them. In extreme grieving scenarios, we are all young children in the way we ‘show up’ because we are grasping to comprehend with our hearts, and our minds often shut down. We present our Inner Child, unprotected and vulnerable, and we entrust the professionals to care for us as they care for our beloved dying loved one.