Learning that your cancer will likely not be cured is difficult for patients to face.
A program that is one of the first of its kind helps such patients address existential and spiritual distress issues as they face their own mortality. The program, known as Growing Resiliency and Courage with Cancer (GRACE), was developed at the Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute in Los Angeles, California.
Arash Asher, MD, from Cedars-Sinai, is the director and a codeveloper of the program.
"We all experience existential crises when we are faced with our mortality," Dr. Asher told Medscape Medical News. "We want to ensure every patient with advanced-stage disease can find inner peace, strength, and meaning.
"Though cure is a possibility for some, healing is a possibility for all. The GRACE program is intended to help patients find a good life, even though it may not be an easy one. Sometimes the very things that threaten our lives may also strengthen the life within us," he commented.
The program consists of 5 to 6 weekly meetings during which patients listen to poetry, read from inspirational books, practice mindfulness, and learn how to create legacies for their loved ones.
Inspiration for the program came from the works of Rachel Naomi Remen, MD, author of My Grandfather's Blessings and Kitchen Table Wisdom, and psychiatrist Viktor E. Frankl, who wrote Man's Search for Meaning.
"Dr. Remen is a physician who grew up with a chronic illness and has written a lot about coping well with the difficulties in life that happen to come your way, not necessarily with cancer but just with life in general. Viktor Frankl was a holocaust survivor who lost his pregnant wife, his parents, his siblings, most of his family members, and many of his friends in the concentration camps. Not only did he survive, he came up with an important theory about what is necessary for survival, which is finding meaning in the suffering that you may be going through. He has a famous quote, which we keep coming back to in the program, which is that everything can be taken from a man except the last of the human freedoms, which is the ability to choose ones' attitude in any set of circumstances," Dr. Asher said.
"I think that our patients lose so much control because they are facing their mortality. To have something that they can hold on to, that gives them a sense of control and mastery, is very important," he said.
Patients in the program often send him emails telling him how they are feeling.
Dr. Asher is keeping a log of some of the emails. He read from one: "Quite possibly our class will end tomorrow. As you may have observed, it is harder for me to attend the class, yet I feel compelled to come because for the first time in my life I have found acceptance, understanding, and compassion, devoid of the pretenses of everyday living. I am with people who share a commonality in humanity I only dreamed of. While I will never give up hope, I am realistic about the future. Preparing for my moving on and attempting to not leave any loose ends for my young children to have to deal with has been a daunting task. Experiencing this program is enabling me to forge ahead one step at a time. Thank you for allowing me to share and grow. I wish you continued success as a healer."The GRACE program is not the same as a cancer support group, Dr. Asher said.
"At the end of the program, the group invariably asks if they can continue as a support group, but when we ask if they would have joined if we presented this as a support group to begin with, they say no. They wanted to join because this program was created as a psycho-educational type of experience."
Matthew Morgan, 51, was diagnosed with aggressive head and neck cancer in 2012. He recently learned the cancer has spread to his ribs, lungs, and femur, and he began searching for greater meaning in his illness.
A participant in GRACE, Morgan said in a statement: "My cancer journey has many ups and downs, unknowns and frustrations that have left me hungry for coping mechanisms and ways to deal with the day-to-day of living with cancer. The GRACE structure provided me with a real toolbox of ways to deal with my cancer. I experienced many 'aha' moments that helped me change my perspective and attitude of being a patient."
In addition to GRACE, Cedars-Sinai has the Cancer Survivorship and Rehabilitation Program, which addresses the physical, psychological, and information needs of cancer patients and their families as they continue or complete their cancer treatment.
These programs include a Cancer Exercise Recovery Program that is designed to help with cancer-related fatigue, improve strength, enhance balance, and fight depression, and an Emerging From the Haze "chemobrain" program to help patients take a proactive approach to dealing with adverse effects of chemotherapy, including memory loss, anxiety, stress, mood changes, and difficulty sleeping.
Programs Not as Common as They Should Be
Programs that focus on existential distress and spirituality are not as common as they should be, says Arif Kamal, MD, a palliative care physician at Duke University in Durham, North Carolina.
"Addressing these issues in programs such as GRACE is something that has definitely fallen behind. Historically, it has been thought that perhaps spirituality and existential issues may not be as important a priority as managing a patient's pain and emotional distress, and that spirituality was only relevant for patients who were highly religious or volunteered that their decisions were based upon a religious framework," Dr. Kamal told Medscape Medical News."We are beginning to learn that most people are in fact quite spiritual and make decisions and have priorities about what is important to them in a spiritual context. Most people actually make decisions about their treatments and palliative care out of their spirituality," he said.
"I think the GRACE program is fantastic. It is one of the first programs that addresses these existential and spiritual distress issues in patients. There are programs that trigger a chaplaincy consult or involve a peer support group, but those tend to focus on mental health issues or family dynamics of finances. But this is not what GRACE is doing," Dr. Kamal said.
"If a patient says, 'I feel like God is punishing me for the things I did early in my life by giving me cancer,' a visit with a social worker may be helpful, but it is not appreciating the complexity of what is really being said and what that patient is going through. Ultimately, what that patient is really saying is that I want a better understanding of why this is happening and how I can make a better journey for myself. The patient is looking for meaning and strength, which is really spirituality and existentialism," he said.
Dr. Asher and Dr. Kamal have disclosed no relevant financial relationships.
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