Tami Borneman is a Senior Research Specialist and Project Director in the Division of Nursing Research and Education at City of Hope, in Duarte, California. An important focus of her career in palliative care has been addressing patients’ spiritual concerns. She’s also interested in palliative care issues in lung cancer patients, and at the upcoming Oncology Nursing Society 38th Annual Congress, she’ll be presenting a poster entitled, “Palliative Care for Quality of Life and Symptom Concerns in Lung Cancer: Educational Intervention,” as part of a project funded by the National Cancer Institute. In this Cancer Network podcast, Tami will discuss spirituality: what it means, and how spiritual interventions can benefit patients with cancer.
—Interviewed by Anne Landry
Cancer Network: Tami, one of the highlighted presentations at ONS Congress this year is “Spirituality Versus Religion,” and the talk description emphasizes that religion and spirituality are not the same. How are they different, and what are some examples of spiritual needs?
Tami Borneman: I think that they don’t have to be exclusive of one another. I think one can be both religious and spiritual. A person can be religious but more spiritual, and vice versa.
The definition of religion that we provide for our patients on our study is that typically, religion usually refers to a specific set of beliefs and practices, usually within an organized group. Spirituality may be found and expressed through an organized religion or in other ways.
A definition put forth by the National Consensus Project: Clinical Practice Guidelines for Quality Palliative Care (2013) states that spirituality is “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and/or to the significant or sacred.”
I think the more important focus is to find out what gives the patient meaning in life, and knowing whether the patient is spiritual or religious serves as a springboard for facilitating desired interventions, according to their needs. There is nothing wrong with these labels, but let’s not stop there. Let’s move beyond the labels to the patient as a whole person. Just as we’ve worked so hard to not label the patient as their disease, I would like to be careful to not label the patient as entirely religious or spiritual. In other words, we need to be careful that we do not pigeonhole a patient so that as they change and as they grow, we don’t miss that opportunity to help them in that process. Our attention needs to go beyond the label.
Cancer Network: In your practice, how do you initiate the spirituality discussion with a patient, and how do you tailor it for an individual patient?
Tami Borneman: It’s not the first question I ask. I think as many healthcare professionals do, they will get a sense of where the patient is, and by that I mean just engaging in normal conversation—what it is that they talk about, what’s important to them. Sometimes I will throw out probing questions to see if they follow that or answer that in a way I am looking for. That really sets the tone for the way that I ask questions about spirituality. Obviously, if someone is just really forthcoming in stating that they went to church last night, then that opens the door for direct communication, which I don’t find with most of my patients. I usually just ask them if they have a particular faith. This is a pretty benign question even for those who profess to be spiritual and not religious, or agnostic, or atheist. I tailor the conversation according to their answer. However, no matter how they answer, I can always ask them what gives their life meaning. So if a patient replies he is Christian, then for him, it may be his faith. For a Buddhist, it may be her time in meditation. For an agnostic or atheist, it may be nature or family. I will offer to pray for those who would like prayer. For others it may be a referral to the chaplain.
Cancer Network: Are these initial discussions best handled one-on-one, or have you done them with a social worker or other healthcare professional present, too, like a psychologist? What about groups of patients discussing spiritual needs together?
Tami Borneman: For me, one-on-one is much easier. I think it takes away the pressure to answer in the right way. I am not opposed to talking about it when other people are present, it just depends on the situation and the patient. In my practice, it is one-on-one most of the time. Sometimes the spouse may be there, sometimes not. We have an educational lung cancer support group that meets once a month, and at various times, there will be a presentation dealing with spirituality. That provides an opportunity for those patients to talk within a group and amongst each other, which has also been very helpful, but generally speaking, I find that it is more one-on-one.
Cancer Network: I wanted to talk about an interesting study led by Aileen Chen, from Dana-Farber that was reported on at the annual ASTRO meeting in the fall of 2012, since you are also involved as an educator, helping lung cancer patients deal with uncertainty. It concerned false hope in patients with advanced lung cancer. The study surveyed more than 300 patients with stage IIIB or IV lung cancer who underwent palliative radiation therapy. It turned out that more than 75% of these patients had false hope, saying they thought their radiation treatment was “very likely” or “somewhat likely” to help them live longer. While these results suggest a need for clearer communication and patient education, they also highlight the issue of false hope, which I’m sure you witness among your patients all the time. Can you talk a little bit about spirituality and how it can be used to support patients who are harboring false hope and how spiritual care can be used as an intervention to address hopelessness?
Tami Borneman: I think it was a great study and it really highlights the need for, in many cases, better communication. I think we need to be careful with this. Two things come to mind:
Healthcare providers need to be as honest as possible with regard to diagnosis, prognosis, and treatment options. This needs to be assessed for understanding throughout the treatment process.
And having hope does not automatically mean the patient is in denial and is carrying around false hope. Those who continue to believe in God for a miracle are not always those who live in a “faith bubble,” as one of my patients stated, or in denial. These do not need to be “either/or” but can be “both.”
I think we also need to distinguish between false hope and denial. For me, true false hope is based on a lack of information or a lack of understanding the information given. Also, a patient’s perception can be tricky. We all know, as healthcare professionals, that patients can be overloaded with information and/or emotions so much so that even clearly given facts regarding prognosis can be misperceived. The onus does fall on us to continually assess understanding, but we can’t control what the patient perceives.
And the other thing is, holding on to hope is many times labeled as denial. There was a great article written by Ann Brady, entitled “Intractable Denial.” She talks about the fact that, for some patients, denial, and we can put hope in there as well, is a transitional phase, and if they give up their hope, then they’ve got nothing left to live for in the time they have left. It’s important that as we assess a patient’s level of understanding about their prognosis, that we don’t strip them of that tiny thread that they are holding on to, to live the life that they have left. I think the study is fabulous and it certainly gives us a lot to look at with regards to our practice, how we might improve, how we talk to patients. I think spiritual care is a great intervention to address hopelessness in that we can always converse with a patient about what gives their life meaning, and we can help transition them in their hope, to go from a hope for cure possibly into a hope for a legacy.
Cancer Network: What are some good resources for nurses who want to learn more about incorporating spirituality interventions into patient care?
Tami Borneman: There are quite a few resources out there. Not all of these are directly about spirituality, but they will help the nurse or the healthcare provider in assessing or conversing about spirituality. One is called Communication in Palliative Nursing. That was put out by Wittenberg-Lyles, Goldsmith, and Ferrell, and it just came out this year. It’s published by Oxford. Another is called Making Healthcare Whole: Integrating Spirituality Into Patient Care, and that’s by Dr. Puchalski and Betty Ferrell. There is also the Clinical Practice Guidelines for Quality Palliative Care, third edition, done by the National Consensus Project for Quality Palliative Care. They have a whole section on spiritual, religious, and existential aspects of care. Dr. Puchalski also just came out with a textbook on spirituality and healthcare, published by Oxford.
Cancer Network: Are there any websites that you would recommend?
Tami Borneman: Yes. GWIS is a website by Dr. Puchalski. (http://www.gwumc.edu/gwish/index.cfm) She has a fabulous website. She provides video of herself talking about spirituality with a patient. It’s very helpful.
Cancer Network: Thanks for your time, Tami! I appreciate your joining us.
Tami Borneman: You’re welcome.
Brady AJ. Intractable denial. November/December 2012. p. 43-4. Available from: www.oncologynurseadvisor.com
Borneman T, Brown-Saltzman K. Meaning in illness. In: Ferrell BR, Coyle N, editors. Oxford textbook of palliative nursing. 3rd ed. New York: Oxford University Press; 2010. p. 673-83.
Cobb M, Puchalski C, Rumbold B. Oxford textbook of spirituality in healthcare. New York: Oxford University Press; 2012.
Puchalski C, Ferrell, BR. Making healthcare whole: integrating spirituality into patient care. West Conshohocken, PA: Templeton Press; 2010.
The National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care. 3rd ed. 2013. Available from: www.nationalconsensusproject.org
Wittenberg-Lyles E, Goldsmith J, Ferrell BR, Ragan S. Communication in palliative nursing. New York: Oxford University Press; 2013.