Guest Expert: Anne Belcher, PhD, RN, AOCN, CNE, FAAN-- Bringing Spirituality into the Discussion of Clinical Trials
Originally posted by: Cathy Muha, AccrualNet Team Member, on the former AccrualNet site on May 30, 2012.
It is a great pleasure to introduce Dr. Anne Belcher as our AccrualNet Guest Expert for May. Dr. Belcher is Director, Office of Teaching Excellence, and Associate Professor at the Johns Hopkins University School of Nursing. Dr. Belcher has been a nurse educator for 45 years and has done it all: teaching, mentoring, publishing, presenting, organizing, and leading nursing education efforts in a variety of roles and settings. Throughout her career, Anne has had a special interest in the role of spirituality in caring for the person across the health-illness continuum. In her post below, Anne talks about the ways in which spirituality plays a part in the clinical trial decision-making process. Have you found that spirituality impacts decision-making and, therefore, accrual? Check out Anne’s post and plan to learn from one another by joining the conversation and posting a comment below.
From Dr. Belcher:
Nurses provide holisitic care to patients—nurturing the body, mind and spirit. Yet we often do not consider the spiritual aspects of patients’ decision-making with regard to clinical research/clinical trials.
While there are numerous definitions of spirituality, the focus of this blog will be on purpose and meaning in life. Thus as humans we all are able to maintain our spiritual well-being by understanding our purpose for being here and the ways in which we bring meaning to our lives and to those of others. I am sure that we have all had the experience of talking with a newly diagnosed cancer patient who asks “why me?” While we may think this question is directed to us as the care provider, the patient is often asking a higher power “why me?” These patients may see cancer as a punishment for known transgressions or as a sentence imposed for inexplicable reasons.
Then there are the patients who ask “why not me?” Often these individuals believe that they were chosen at random or with a purpose by a higher power to experience cancer and its challenges; they see the opportunities presented rather than the difficulties to be surmounted.
Whichever the case with an individual patient, I see the nurse as helping the individual to determine what purpose is served by their having this diagnosis and what meaning can be derived from this experience. This way of viewing the situation may lead naturally to a discussion of clinical trials. We have all known patients who have indeed found purpose and meaning through their participation in a clinical trial.
When we consider the various dimensions of spirituality, we can delve further into the patient’s perspective and help them to make a decision about clinical trial enrollment. Some of these dimensions that we might explore with the patient include the need for connectedness, hope, forgiveness, and love. Perhaps our most frequent experience is with patients who hope either to respond positively to a trial or to help others by their participation. I find this to be evidence of spiritual well-being and a very effective spiritual coping strategy. Other patients may value the connectedness to the health care providers or other patients participating in the trial. Some may see this opportunity as a way of finding forgiveness for perceived wrongs against others or in defiance of a higher power. Still others find participation as a way of expressing love for other humans or for family and friends, who encourage them to continue “the good fight.”
So the role of the nurse, as I see it, is to conduct a spiritual assessment of the patient, with a focus on their sense of the meaning of their life and of having cancer and the purpose to be derived from this complex experience. As noted earlier, this often leads naturally into a discussion of clinical research/clinical trials and the value of enrollment as a way in which to find purpose in experiencing this challenging diagnosis and treatment trajectory.
I welcome your thoughts on how you have addressed the role of spirituality in introducing clinical trials to your patients. What has worked for you? What have you learned? What has surprised you the most?