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Managed Hope

by Linda Strause, PhD

It is often a long soul sitting journey; a journey filled with moments of joy, periods of despair, and the burden of life and death decisions. Although we put our trust in the hands of our doctor’s it is ultimately a personal decision when it comes to choices about care, and those choices become more limited as we approach the end of life. Hope is a good indicator of positive medical outcomes. Studies have found that a hopeful patient is more likely to experience good medical outcomes than a patient who has lost all hope. It is important to preserve this feature while balancing it against the reasonable expectation of success. Giving up hope of cure is not the same as giving up hope all together. Accepting the inevitability of death is not the same as giving up hope. One can still hope for love, comfort and solace in your final days.

 There are dates imprinted in my mind as I began soul sitting for my husband, Randy. Diagnosed with incurable brain cancer on April 8th, 2008 that day will forever be one of both fear and hope. And it was hope that we hung onto. Hope is the emotional state which promotes the belief in a positive outcome. Family and friends gathered together and together we hoped that a cure was obtainable. With every new brain MRI scan we listened to the findings, considered the next step options, and moved forward. We maintained our hope that Randy would be that rare one to two percent that would beat this terrible disease. For the first year our life seemed to be balanced between fear and hope, and I was beginning to learn how to manage that hope.

It was a sunny, fall day in September 2009 when together we listened to the most recent MRI findings. This time it wasn’t good. This time the options were minimal. Our two sons moved back home and we discussed our options. We had some vacations planned, items on Randy’s ‘bucket list’, so we made the decision to stay on chemotherapy with the hope of slowing the progression. We had a party for many old friends, went to Mexico to scuba dive and attend a wedding, and traveled to India with our extended family. In India we visited the ancient city of Varansi on the banks of the Ganges River and, of course, the magnificent white marble mausoleum, the Taj Mahal.

Early in February 2010 my older son called me to let me know that Randy was feeling numbness in his right arm. Literally within days the numbness spread throughout his right side, eating became difficult, and mobility limited. I had to make another difficult decision, the decision to call hospice. There was a quietness that penetrated every pore of my body, deep within my soul. Family and friends were silently concerned. Was this the end? Have they given up hope?

There is an evolution of hope for the dying. Hope is never lost, hope is never given up, but hope is forever evolving. As a Soul Sitter, we must learn to manage hope. Initially our hope was for a cure. We embraced the power of that hope and our decisions were predicated on finding a cure. Later we found that our hope had evolved. We found joy in the extra time we had together and comfort in knowing that Randy was not in any pain. And for a long while we held on to our hope for time and hope for comfort. As we journeyed to that transition phase hope again had evolved. Soul sitting at the end of life requires the embracement of knowing that there is no going back. To hope for an unattainable cure is not an option. And our hope evolved again. We hoped that Randy, a husband and father, would die with dignity and peacefully. We hoped that as Soul Sitters we were able to balance the quality of his life with dignity in death. We hoped that his soul would rest in peace and remain forever in our hearts. Just before midnight on April 16, 2010, Randy died at home, surrounded by his family.

BUT we never, not for a moment, gave up HOPE. Soul sitting for a loved one is an honor and a privilege. The hope that a Soul Sitter has must be managed along the journey to ensure that at the end of life hope still remains strong.

Dr. Strause’s passion for end of life care began while serving as Director of Education and Research at San Diego Hospice. She is the Founding Chair of the San Diego Hospice & Palliative Care research ethics committee, where she served as chair for over 15 years. In addition she is an executive in the biotechnology industry where she is responsible for the conduct of clinical trials in oncology. She is currently focused on the message of Managed Hope and will be launching the website early 2014.