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© 2003 American Society for Clinical Oncology
E-motions: Email for Written Emotional Expression
From the Department of Palliative Care and Rehabilitation Medicine and Department of Gynecologic Oncology, Division of Cancer Medicine, University of Texas M.D. Anderson Cancer Center, Houston, TX. Address reprint requests to Florian Strasser, MD, Department of Palliative Care and Rehabilitation Medicine, University of Texas M.D. Anderson Cancer Center, 1515 Holcombe Blvd, Box 0008, Houston, TX 77030; email: fstrasser{at}mdanderson.org and fstrasser{at}bluewin.ch.
It is painful — give me another medication — it is too sedating — I am in pain — I am so weak — I need help — I did not take the medication — it is unbearable — I am thirsty — my colostomy bag fills too quickly — the laxative bloats — I am constipated Mrs. F was a 51-year-old teacher suffering from refractory Müllerian adenocarcinoma originating in the pelvis. The tumor had metastasized to her liver and had eroded through the skin of her buttocks. She was experiencing neuropathic pelvic pain, hygienic problems from a rectovaginal fistula, fear of bleeding from a purple nodule growing rapidly on her buttock, difficult ambulation because of swelling of her left leg, gastrointestinal symptoms associated with the colostomy and constipation, as well as loss of weight, appetite, and energy. Mrs. F consistently expressed a high level of symptom distress referable to the array of her somatic complaints. She was seen many times in the outpatient clinic of her primary cancer physicians as well as in the palliative care outpatient clinic. She visited the emergency room often and made daily telephone calls to several members of the different teams involved in her care. She usually refused to comply with medication instructions and advice, but expressed the same somatic complaints. A maladaptive help/rejecting coping pattern was evident: repeatedly she would ask for help and repeatedly she would reject the attempts to help her. All supportive counseling attempts by multidisciplinary team members seemed to have failed. The attempts were focused on allowing Mrs. F to express her fears, anger, and losses related to the cancer and get some relief from her global suffering. This failure contrasted with her concurrent writing of poems on existential issues, as we later learned. Her husband and three sons experienced her distress but felt helpless. Structured daily phone calls by rotating team members were conducted, but there was no improvement in her expression of distress or her perception of suffering. Searching for meaningful moments in Mrs. F’s day, we explored her house; when we learned about her computer habits, the idea was born. We asked Mrs. F: "Would you consider sending us emails about how you feel?" With the consent of her spouse, we agreed on her exclusive one-way use of this medium for that purpose, expressly specifying that the email was not to be used for medical advice or emergencies, including suicidal ideation. Consent was obtained for a potential breach of confidentiality because of the inherent limitations of email and for filing the email in her medical chart. The verbal contracts were made after we consulted the hospital legal department and as a consequence of intense team discussions about the risks of medical email. Below are excerpts from Mrs. F’s emails including her titles (which she consented to have published). Day 1: Writing letters. For today, I will let the world know that this cancer is very wrong for this family. We are a good, strong, bonded family that need to be together for a long time. We could do much good in this world. Yet, we are being torn apart from a minute monster cell that is overtaking a big unit of love and need of each other. How devastating this cancer is for my husband, three sons, and myself. How powerless we are all against it!! Day 3: Anger. But what is upsetting me now is about all the future pills I will get to miss out on, according to the paper, of things that might work? Too late for me! I should pose for the cancer center’s billboard as cancer failure for this #1 cancer center in the world! Day 4: Longevity. Wow! Really makes me feel good to read about. In fact, it makes me boil a little inside that I should be entitled to that too. Oh well, 51 is much too young to go away in this day and age. I guess I’ll confront God when I see Him!! Day 6: Hope. Hope? I grew up with HOPE! Of course, I have not given up my religion, but Hope and trust that God will get me cured and out of this deep problem I am in is no longer a standard I can live by. Of course, I guess every human being is innately guided by HOPE. HOPE has been smothered by this dreadful cancer, which is more powerful than this four letter word, especially since I am in this "never, never land" of nothing going inside me to kill off the monster cells that keep multiplying, eating me up bit by bit. I had HOPE with each chemo I took, each endless hour I spent getting the stuff. For what?? Just to get to this HOPELESS point!!!!!
In the following weeks Mrs. F gradually framed both the physical and emotional issues in her verbal conversations. She began to express anger, frustration, helplessness, perceived lack of control, sadness, and hopelessness. For example, she shared the pain of seeing, for the last time, her sons riding the school bus (before summer vacation) (Fig 1
Mrs. F decided to go to hospice to die, and she died 1 week later. During the 6 weeks from the first email to her death, she twice spent 2 weeks at home uninterrupted by hospital visits, in contrast to six hospital and four emergency room visits during the preceding 6 weeks. The expression of emotions has the potential of alleviating distress1 and suffering, but it is a delicate process that requires respect, trust, and courage. A respectful approach to patients with advanced cancer, who may be assumed to have hidden emotions, may resemble the approach toward breaking bad news.2 Emphasis on the setting, checking on what the patient understands, warning of the potential of hurtful information, asking for permission to proceed, and the promise of nonabandonment are known to be helpful.2 The exchange requires adequate communication skills and comprehension of emotions associated with the end of life.3 Encouraging patients to express their hidden emotions is most often an active intervention carrying potential therapeutic effects (just as incision of a pustule can provide relief). Even the diagnosis of hidden emotions may not be separable from performing a therapeutic intervention. Consequently, emerging stressors, such as unfinished business or absent symbolic immortality ("What if my whole life has been wrong?"),4 need to be recognized and addressed. Structured writing about emotionally traumatic experiences has been observed to improve the well-being of healthy individuals as well as the health status of patients with asthma or rheumatoid arthritis.5 These findings need to be confirmed,6 but they suggest that writing may be useful for some patients whose unexpressed emotions are painful. We used email in this case as a therapeutic tool, a modern variation of listening to a patient’s concern. In addition, email was an interventional medium that fit the patient’s desire to control communication and possibly to interact on grounds other than the hospital territory, thus escaping from her and her physicians’ roles. In the case of Mrs. F, email also represented her care provider’s willingness to endure multiple failures of counseling, communication, and relief of suffering—only to try yet again to offer a novel suggestion and risk more failure and frustration. The question of whether and how to offer email communication to patients and families is challenging to most physicians and other health care workers. Their concerns may include the quality of patient–physician communication and consequently their relationship, time expectations, the physician’s professional role as electronic health care provider, the technical reliability of email, as well as ethical, legal, and economic issues of E-health.7 Email per se, in many situations, is unlikely to enhance the quality of patient–physician communication and relationship.8 The human contact that engenders trust and the rendering of medical diagnoses may not be replaced by electronic communication. But the new technology may lead to a reexamination of the values of good communication. Email could free the face-to-face time from routine matters and standard information and could provide an additional venue that may prove useful for the care of patients in some situations. The success of electronic, virtual support communities (eg, cancer support groups), probably one of the most common health-related uses of the Internet,9 suggests a willingness of patients to share intimate emotions with others. Online communications may be perceived as more advantageous than face-to-face support groups because of their 24-hour availability and the absence of perceived pressure to participate in the discussions.10 However, the anonymous character of these groups may be inherently different from the trustful, personal relationship of patient and physician. In addition, the potential of improved accessibility of physicians by email may be mitigated by the Internet’s higher unreliability. Patients using email and expecting timely responses may be disappointed by delays or stressed by uncertainty, which may complicate their relationship with the physician.11 Although patients seem to welcome email contacts with their physicians,12 the dimensions of patient–physician communication, which may profit from the new medium, remain to be elucidated: transfer of test results, prescription refills, medical information and education, physician advice, patients’ communication of concerns and emotions, physicians’ delivering of online counseling, and other facets of care. In the case of Mrs. F, email was used only one-way (by her to us), in addition to the scheduled daily phone calls. Nevertheless, our offer to her of a personalized email symbolized the physician’s availability, accessibility, and willingness to listen. It allowed Mrs. F to write her concerns as she thought of them and to choose the setting and timing of communicating her emotions, so unlike visiting the sometimes hurried and stressful hospital setting. The physician must know and communicate to the patient the technological weaknesses and administrative uncertainty of email, like those of other computer-based sources of medical information, which may impinge on the patient’s confidentiality and privacy. In our case, this information was conveyed and agreed upon by witnessed, verbal informed consent. The legal boundaries of email practice are being developed by physicians’ organizations, health plans, and hospitals. Some organizations have preliminary electronic communication policies (eg, definition of an online consult, documentation of information on which advice is based); others simply block this type of communication.7 The concerns regarding liability may impede rapid spread of this medium, as may the uncertainty of the economic consequences (reimbursement, remuneration) of providing professional services by email. This case emphasizes the challenge of professional creativity, or the dance between doing things right and doing the right thing. We had many discussions among our team, because the emails seemed to be helpful for the patient (doing the right thing), but the legal requirements and potential liability consequences were insufficiently defined (doing things right). We were tempted to solve this conundrum by forbidding emails,13 allowing only phone calls. However, besides aiming to provide optimal care for the patient and her family, the experience of this case was a precious process that enhanced our personal awareness and professional growth.14 Helping patients to express their emotions may reduce their distress. Some patients find written expression a useful way of sharing concerns. In this clinical situation, email communication seemed to be a helpful medium for this patient to express her emotions.
F.S. is supported by BIL grant no. KFS 950-09-1999 from Swiss Cancer Research.
1. Stanton AL, Danoff-Burg S, Cameron CL, et al: Emotionally expressive coping predicts psychological and physical adjustment to breast cancer. J Consult Clin Psychol 68:875–882, 2000[CrossRef][Medline]
2. Baile WF, Buckman R, Lenzi R, et al: SPIKES: A six-step protocol for delivering bad news—Application to the patient with cancer. Oncologist 5:302–311, 2000
3. von Gunten CF, Ferris FD, Emanuel LL: The patient–physician relationship: Ensuring competency in end-of-life care—Communication and relational skills. JAMA 284:3051–3057, 2000 4. Tolstoy Library: The death of Ivan Ilych by Tolstoy, 1886, translated by Louise and Aylmer Maude, 9/96 update. Http://members.aol.com/Tolstoy28/ivan.txt
5. Smyth JM, Stone AA, Hurewitz A, et al: Effects of writing about stressful experiences on symptom reduction in patients with asthma or rheumatoid arthritis: A randomized trial. JAMA 281:1304–1309, 1999
6. Greenhalgh T: Writing as therapy: Effects on immune mediated illness need substantiation in independent studies. BMJ 319:270–271, 1999
7. Spielberg A: On call and online: Sociohistorical, legal, and ethical implications of e-mail for the patient–physician relationship. JAMA 280:1353–1359, 1998 8. Baur C: Limiting factors on the transformative powers of e-mail in patient–physician relationships: A critical analysis. Health Commun 12:239–259, 2000[CrossRef][Medline] 9. Pereira J, Bruera E, MacMillan K, et al: Palliative cancer patients and their families on the Internet: Motivation and impact. J Palliat Care 16:13–16, 2000 10. Klemm P, Reppert K, Visich L: A nontraditional cancer support group: The Internet. Comput Nurs 16:31–36, 1998[Medline] 11. Couchman GR, Forjuoh SN, Rascoe TG: E-mail communications in family practice: What do patients expect? Fam Pract 50:414–418, 2001 12. Ball MJ, Lillis J: E-health: Transforming the physician/patient relationship. Int J Med Inf 61:1–10, 2001[CrossRef][Medline] 13. Flower J, Guillaume P: Don’t fix it. Physician Exec 26:64–66, 2000 14. Kern DE, Wright SM, Carrese JA, et al: Personal growth in medical faculty: A qualitative study. West J Med 175:92–98, 2001[CrossRef][Medline]
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Copyright © 2003 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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