By Rev. Sue Wintz MDiv BCC, Managing Editor, Plainviews, Consultant for Chaplaincy Practice and Leadership, HealthCare Chaplaincy
When we or someone we love is sick, we expect our health care team to address our physical illness. However we know that suffering is oftentimes more than physical pain. We can become emotional when faced with an advanced illness: upset, anxious, fearful, or experience other feelings. Sometimes our health care providers can help us with that.
But what about the deeper parts of illness and suffering? How do we find meaning and comfort when the very beliefs and values we hold onto are challenged?
Jonathon was a young man in his 20s who was admitted to the hospital after experiencing symptoms that left him feeling disoriented, although with very little pain. After a work-up, the physician came in with news that changed his world forever: a diagnosis of an aggressive brain tumor. “How can God let this happen to me? I’ve been faithful in my religion all my life. I have a beautiful wife and our daughter just turned two years old. This can’t be happening.”
Religious, spiritual, or cultural needs and resources may be important to us but illness and suffering can make it difficult to draw on our beliefs or find the support that we need. Emotional and spiritual suffering is just as important as that we experience through physical pain. We may have strong spiritual resources or involvement with a religious or spiritual community that can come to our aid. But many of us have neither of those or have such severe suffering that those resources are not sufficient for the health crisis we are experiencing. So what to do?
Jonathon’s doctor knew that he needed someone who could support her in her emotional and spiritual distress. So he wrote an order for the hospital chaplain to be consulted. The chaplain listened to Jonathon’s distress, providing space for him to express his deepest fears and anger. And over the course of his stay, which included surgery to remove the tumor, the chaplain provided support as he and her family struggled to find meaning and comfort in what lie ahead.
Health care facilities are recognizing that supporting and meeting spiritual, religious, and cultural needs helps patients cope and improves their and their families’ satisfaction with the overall care provided. To do so, they are increasingly including on their team clinically trained, board certified professional chaplains.
Professional board certified chaplains, as full members of the multidisciplinary care team, ensure that persons’ beliefs and values are recognized and incorporated into their care. They have academic and clinical training which gives them the skills to assist people of any faith or no faith who are sick, injured, or suffering. They will accept without judgment a patient’s own beliefs, faith and practice as well as their doubts and misgivings. They are prohibited from proselytizing by their national Code of Ethics. They will make sure that you are able to continue in the hospital any religious or cultural practices that are important to you. If you desire, they will find a leader from a community of your faith or tradition to visit you.
Board certified chaplains are non-judgmental listeners. They provide a safe space to verbalize one’s hopes and fears and to explore religious and spiritual concerns that challenge one’s sense of meaning when faced with a life-altering event.
It is important to know that not all hospitals or other health care facilities have professional chaplains on staff. If this is important to you, you might want to check with the facility you or your loved one would be using, and let them know that you hope they would consider hiring a professional chaplain. If your hospital or other health care facility does have a professional chaplain, a simple request to your nurse or physician that you would like to see the chaplain should be enough to have the chaplain visit.
When should you request a chaplain?
- When you have received bad news
- When you are anxious about an upcoming treatment or surgery
- When you are feeling lonely and isolated from your family and community
- When you feel you may have lost touch with the meaning and purpose in your life
- When you feel your religious or spiritual beliefs and practices are not helping you cope as much as you would hope
- When you feel you might want to be reconnected to a faith community
- When you are having trouble communicating with your family or your health care team
- When you have to make decisions about your care and are having trouble sorting out your thoughts
- When you want help continuing important religious or spiritual practices while in the hospital
- When you want someone to reach out to your religious or spiritual community for you
- When you have cultural practices that you would like to engage in or have part of your care
When faced with an advanced illness, one’s life can be turned upside down. A board certified professional chaplain can be one of the key persons on your health care team when you are searching for meaning and comfort in the midst of suffering: physical, emotional, and spiritual.
This is the first time I’m going public with the fact that I have advanced ovarian cancer. I thought I could avoid the fate of my mother and her mother, both of whom died of ovarian cancer in their 50s, and live well past my 60s and even 70s. But at 58, I’ve had to accept that that is not likely. I live and plan my life in shorter increments now and hope that new therapies will continue to buy me more time.
I did everything I could to avoid getting ovarian cancer. When I was diagnosed with breast cancer in 1983 at the age of 28, it seemed that if I didn’t take control of my care I would die. For 1 year prior, I first felt a painful, palpable hard mass in my left breast, I couldn’t get a doctor to take my suspicions seriously and biopsy the tumor. Every doctor I saw insisted I was too young to have breast cancer.
Finally, a surgeon I knew agreed to biopsy the mass, and the pathology report showed it was malignant. The diagnosis changed the course of my life. I left college, where I was studying medical sociology, and underwent aggressive treatment to cure my cancer, including a regimen of CMF (cyclophosphamide, methotrexate, and fluorouracil), and a lumpectomy, followed by radiation. I also founded Vital Options, the first advocacy organization for young adults with cancer.
In 1999, when BRCA1/2 mutation testing was still investigational, my father, older sister, and I were screened, and both my sister and I tested positive. We repeated the test again after it became available for clinical use. The miracle of this story is that all four of my nieces are negative for the BRCA gene mutation. Since I don’t have children, this terrible genetic legacy that has plagued my family for generations has come to an end.
Palliative Care Is Transforming My Life
Ten years ago—hoping to escape my genetic fate, and in celebration of being cancer-free for 20 years—I decided to have a prophylactic oophorectomy. Although the decision was a difficult one, I wanted to reaffirm my life and be as proactive as I could to stay healthy. But when I awoke from the surgery, I was told that I already had confined, very early-stage ovarian cancer.
I was treated with carboplatin and paclitaxel, and we all expected a good outcome. Unfortunately, multiple localized lesions have appeared over the years, requiring various therapeutic approaches, including an experimental protocol with a PARP inhibitor.
Despite these efforts, last year the cancer spread to my lungs. Although those lesions responded quickly to treatment, a mass in my psoas muscle and near my bowel caused me so much pain, I was referred to a palliative care specialist for pain management.
The experience has given me a good deal more than just pain relief. I now recognize in a very personal way the great value palliative care brings to the continuum of cancer care. Palliative care connects the physical and psychosocial dots around the whole patient. It has transformed the quality of my life and enhances the active clinical treatment I receive from my oncologist.
While I know that I will most likely follow in the footsteps of my grandmother and mother and never see old age, I’m not giving up. I am also finding new meaning and purpose in this phase of my cancer journey. I’m currently on a regimen of oral cyclophosphamide and infusions of bevacizumab (Avastin), and I’m pleased that early indications suggest the combination may be slowing the spread of cancer.
The transition to palliative care has made all the difference in my ability to maintain my fast-paced career and continue to function at a high level in all areas of my life. For the first time in 30 years, cancer is almost incidental to my care. Now, the quality of my life is paramount.
I decided to go public with my ovarian cancer recurrence because I felt an obligation to help other cancer survivors as well as physicians understand that the transition to palliative care does not mean surrender. My experience is proof that patients can live with advanced disease and still be a vital force, maintaining control of their lives.
I think many people associate palliative care with end-of-life hospice care, and that misperception needs to change. The best way to do that is by introducing the subject of palliative care into standard cancer care earlier on—soon after the initial diagnosis—and certainly by integrating the two practices as soon as a patient is diagnosed with metastatic disease.
In addition to my first-hand experience with the benefits of palliative care, I’ve also become educated about the importance of increasing the understanding and use of palliative care through the work I do as a member of C-Change, an organization dedicated to eliminating cancer as a major public health problem, and its National Conversation Subcommittee of the Assuring Value in Cancer Care Advisory Committee, a collaborative effort by ASCO and C-Change. Our efforts are focused on stimulating a national dialogue about palliative and hospice care.
Through this work and my activities with Vital Options, I realize what a wonderful opportunity I have to be the messenger to both patients and physicians about the importance of demystifying palliative care by incorporating it into the medical oncology discussion. With routinely accessible palliative care, all of the patient’s needs—physical, emotional, practical, and spiritual—can be met.
Living a Full Life
Coming to terms with having metastatic disease is difficult, and while I am fortunate to still be able to receive beneficial treatment with the possibility of a longer life, I must also be realistic: My disease may one day lead to that transition from palliative care to hospice care. But I’m not there yet. Although I can’t control the progress of my cancer, I can control how I choose to cope with the seriousness of my situation.
My work has given my life meaning, and I am grateful to have the opportunity to tell my story and, hopefully, educate both survivors and oncologists about the possibilities of living a full life with advanced cancer.
Everything that happens to me now is a gift. ■
Selma R. Schimmel is the Founder and CEO of Vital Options International (vitaloptions.org), a cancer communications organization, which produces The Group Room and Advocacy in Action video programs. Ms. Schimmel lives in Southern California.