Hair and Scalp

Delivering Bad News to Patients with Hair Loss: "I have good news and bad news.."

Ariana Eginli, BA, and Amy McMichael, MD

January 2016

Many nondermatologists do not realize how many times in a day that dermatologists have to deliver news that a condition is difficult to treat or not curable. At the American Academy of Dermatology (AAD) Summer 2015 meeting, there was a session on “breaking bad news” where participants were given the task of delivering a terminal diagnosis of melanoma to an actor patient. The goal of this session was to help dermatologists practice their communication skills in a challenging simulated clinical scenario. This session is a reminder that having these difficult conversations with patients is an inevitable reality for physicians, no matter what specialty they practice.

Many physicians find these interactions stressful and fear that they are ill-equipped at guiding their patients through the emotional fallout of receiving bad news. Luckily a number of studies have shown that clinician skills in these conversations can be taught and improved through practice.^1-9 In the past 20 years, several initiatives, like the AAD session, have helped introduce guidelines, protocols, and general advice for physicians to follow when breaking bad news. Conditions like hair loss where there is such an emotional impact on the patient can be time-consuming and draining for the treating physician. This can be a deterrent for treating hair loss in a busy clinic.

In this article, we discuss how to break bad news regarding hair disorders with a focus on how to conduct these difficult conversations with patients. It is our hope that these recommendations can help dermatologists feel more comfortable discussing hair loss with their patients.

What Is Bad News?

Defining what constitutes bad news in medicine is challenging. Bad news is subjective and has certain gradations, effecting individuals differently depending on their life experiences, expectations, personality traits, beliefs, perceived social supports, and emotional resilience.¹⁰ Most of the medical literature defines bad news as “any news that drastically and negatively alters the patient’s view of her or his future…”¹¹ or that “results in a cognitive, behavioral, or emotional deficit in the person receiving the news that persists for some time after the news is received.”¹⁰ Interestingly, none of these definitions incorporate the perspective of the person delivering the bad news, for example, the physician. But physicians also know intrinsically what constitutes bad news in medicine, because they feel uncomfortable and/or dread having these difficult conversations with their patients. Thus, in the simplest form, bad news is any information that patients do not want to hear and that physicians do not take pleasure in delivering.

How Does Bad News Relate to Hair Disorders?

Hair loss has been shown through multiple studies to have an impact on the quality of life of patients, especially women.^12-15 Patients with hair loss report loss of self-confidence and lower self-esteem.¹⁴ While hair loss is not a life-threatening disease, it can be perceived just as poorly. For some patients, it is almost like a death—perhaps the death of the self they knew and recognized in the mirror for many years. Patients can often get emotional when discussing their hair loss, and their emotions should not be trivialized.

Bad news related to hair disorders, usually occurs at 2 times in the medical visit. First, it starts with delivering the actual diagnosis and prognosis. Any kind of hair loss may elicit sadness or anxiety for a patient. Secondly, it occurs when addressing patients’ expectations about treatment. Many patients expect medications to restore their hair to what it once was, and too often this is not possible.

Some patients expect to get the same response to a medication that anecdotally helped a family member or friend with hair loss. For example, patients with primary scarring alopecia may expect regrowth of their hair with topical minoxidil when, actually, their form of hair loss is less likely to improve on minoxidil alone compared to nonscarring, androgenic alopecia. Ultimately, when patients’ expectations cannot be met—however, unrealistic they may be—physicians need to be sensitive about how to deliver this bad news.

How Can Dermatologists Best Deliver Bad News to Hair Loss Patients?

There are a number of step-by-step models and guidelines for physicians to follow when imparting bad news to their patients. They were developed to facilitate the flow of information and provide physicians with several strategies for addressing their patients’ distresses.¹⁶ Though these models were not developed specifically for hair loss patients, they are applicable to all medical specialties. Examples of these models are summarized in the Table.^16-19The effectiveness of using these models on patients has not been well studied, and thus no specific model is reportedly better than another. Essentially all the models follow a similar format consisting of preparation for disclosure and follow-up.²⁰

Article continues on page 2

Based on these guidelines and our own experiences with delivering bad news to hair loss patients, we have summarized key recommendations:

Create an appropriate setting for a conversation. There should be privacy, adequate time to talk, and minimal distractions.
Always have a box of tissues within reach. Patients may become emotional upon hearing they have a hair disorder.
Do your homework. This not only means knowing your patients’ diagnoses well, but also researching accurate and reliable websites, pamphlets, and articles for your patients to reference. Patients often search their diagnoses on the Internet and, unsurprisingly, come across a bounty of inaccurate information. In our clinic, we frequently refer patients to the Cicatricial Alopecia Research Foundation (CARF, www.carfintl.org) or the National Alopecia Areata Foundation (www.naaf.org) websites, because we know the information on these websites is accurate and current.
Forgo using medical jargon, technical terms, or abbreviations. Explain the disease process in simplified terms that patients can understand. For example, an inflammatory cicatricial alopecia can be explained as “a condition where immune cells come up to the scalp and cause inflammation and irritation around the hair follicles, leading to scarring if the inflammation is not controlled with medications.”
Be honest. Several studies show that when patients who received bad news were surveyed about their experiences, they frequently appreciated honesty.^21-23 Patients need to have a good understanding of their disease state and their prognosis so that they can make an appropriate decision about their care and have realistic expectations from treatment.
Have some finesse. Honesty does not mean being too blunt. It is important to find the right balance between being honest yet encouraging. Patients also appreciate when their physicians show concern and compassion.²¹ Use phrases such as, “I know this is so difficult for you,” “hair is a very sensitive topic for many people, especially women,” or, “I understand how you can feel this way.”
Provide hope. Tell patients that everyone responds differently to treatment, with some patients having good hair regrowth and/or thickening of their existing hairs—and that you could be one of them. When discussing cicatricial alopecia, we often tell patients “though you have a form of scarring hair loss, it is possible that there may be hairs in the scalp that are unable to grow because of the surrounding inflammation. So you can see regrowth once the inflammation is decreased with the appropriate medications.” This helps provide the hope and motivation patients need to remain compliant with their therapy.
Focus on the positive. Remind patients there are treatment options. Even when treatment options do not provide regrowth, mention that they can at least suppress progression of hair loss or decrease scalp symptoms.
Have a plan in place that will best suit each patient’s lifestyle and financial means. Present options for treatment and mention the cost of these treatment options. Some patients may be willing to pay out-of-pocket for any treatment while others may not. We let our patients know that there are several available options and that if 1 medication or treatment plan fails, we can work together to come up with another plan. This delivers a message of teamwork and support, further easing our patients’ anxiety and strengthening their trust in us.

Some physicians are tempted to put things into perspective for patients with alopecia by reminding them that they do not have a life-threatening illness and their disorder is not severe. We caution physicians against using this technique. The fact that most patients with primary alopecia are otherwise healthy should certainly be emphasized during the discussion. However, patients do not want their disorder to be trivialized and/or made to feel embarrassed about getting emotional over their hair loss. In fact, several studies show that these patients’ quality of life suffer considerably.^12-15 Ultimately, compassion and hope are the tenants for delivering bad news to patients with hair loss. Even though research on therapeutic options and evidence-based treatment protocols for hair loss disorders are limited, we are optimistic about future therapies and we hope to instill this optimism in our patients.

Ms. Eginli is research fellow in the department of dermatology at Wake Forest Baptist Health in Winston-Salem, NC.

Dr. McMichael, The Mane Point section editor, is professor and chair in the department of dermatology at Wake Forest Baptist Health in Winston-Salem, NC.

Disclosure: Dr. McMichael has received grants from Allergan and Proctor & Gamble. She is a consultant for Allergan, eResearch Technology, Inc Galderma, Guthey Renker, Johnson & Johnson, Keranetics, Merck & Co., Inc, Merz Pharmaceuticals, Proctor & Gamble, Samumed and Incyte. She receives royalties from Informa Healthcare and UpToDate and also has conducted research for Samumed.

Ms. Eginli reports no relevant financial relationships.

References

1. Wolfe AD, Frierdich SA, Wish J, Kilgore-Carlin J, Plotkin JA, Hoover-Regan M. Sharing life-altering information: development of pediatric hospital guidelines and team training. J Palliat Med. 2014;17(9):1011-1118.

2. Pang Y, Tang L, Zhang Y, et al. Breaking bad news in China: implementation and comparison of two communication skills training courses in oncology. Psychooncology. 2015;24(5):608-611.

3. Kissane DW, Bylund CL, Banerjee SC, et al. Communication skills training for oncology professionals. J Clin Oncol. 2012;30(11):1242-1247.

4. Back AL, Arnold RM, Baile WF, et al. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med. 2007;167(5):453-460.

5. Alexander SC, Keitz SA, Sloane R, Tulsky JA. A controlled trial of a short course to improve residents’ communication with patients at the end of life. Acad Med. 2006; 81(11):1008-1112.

6. Szmuilowicz E, el-Jawahri A, Chiappetta L, Kamdar M, Block S. Improving residents’ end-of-life communication skills with a short retreat: a randomized controlled trial. J Palliat Med. 2010;13(4):439-452.

7. Tobler K, Grant E, Marczinski C. Evaluation of the impact of a simulation-enhanced breaking bad news workshop in pediatrics. Simul Healthc. 2014;9(4):213-219.

8. Fujimori M, Shirai Y, Asai M, et al. Development and preliminary evaluation of communication skills training program for oncologists based on patient preferences for communicating bad news. Palliat Support Care. 2014;12(5):379-386.

9. Liénard A, Merckaert I, Libert Y, et al. Is it possible to improve residents breaking bad news skills? A randomized study assessing the efficacy of a communication skills training program. Br J Cancer. 2010;103(2):171-177.

10. Ptacek JT, Eberhardt TL. Breaking bad news. A review of the literature. JAMA. 1996;276(6):496-502.

11. Buckman R. Breaking bad news: why is it so difficult? Br Med J. 1984;288(6430):1597-1579.

12. McMichael A. Ethnic hair update: past and present. J Am Acad Dermatol. 2003;48(6 suppl):S127-S133.

13. Van Der Donk, J, Hunfeld JA, Passchier J, Knegt-Junk KJ, Nieboer C. Quality of life and maladjustment associated with hair loss in women with alopecia androgentica. Soc Sci Med. 1994;38(1):159-163.

14. Williamson D, Gonzalez M, Finlay AY. The effect of hair loss on quality of life. J Eur Acad Dermatol Venereol. 2001;15(2):137-139.

15. Dlova NC, Fabbrocini G, Lauro C, Spano M, Tosti A, Hift RH. Quality of life in South African Black women with alopecia: a pilot study. Int J Dermatol. Published online ahead of print November 6, 2015.

16. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302-311.

17. Rabow MW, McPhee SJ. Beyond breaking bad news: how to help patients who suffer. West J Med. 1999;171(4):260-263.

18. Back AL. Vital Talk. https://vitaltalk.org. Accessed December 30, 2015.

19. Narayanan V, Bista B, Koshy C. ‘BREAKS’ protocol for breaking bad news. Indian J Palliat Care. 2010;16(2):61-65.

20. Harman S, Arnold R. Discussing serious news. In: UpToDate, Block SD (Ed), UpToDate, Waltham, MA. https://www.uptodate.com/contents/discussing-serious-news. Accessed December 30, 2015.

21. Parker PA, Baile WF, de Moor C, Lenzi R, Kudelka AP, Cohen L. Breaking bad news about cancer: patients’ preferences for communication. J Clin Oncol. 2001;19(7):2049-2056.

22. Friedrichsen MJ, Strang PM, Carlsson ME. Breaking bad news in the transition from curative to palliative cancer care: patient’s view of the doctor give in the information. Support Care Cancer. 2000;8(6):472-478.

23. Girgis A, Sanson-Fisher RW, Schofield MJ. Is there consensus between breast cancer patients and providers on guidelines for breaking bad news? Behav Med. 1999;25(2):69-77.

What Is Bad News?

How Does Bad News Relate to Hair Disorders?

How Can Dermatologists Best Deliver Bad News to Hair Loss Patients?

Based on these guidelines and our own experiences with delivering bad news to hair loss patients, we have summarized key recommendations:

Create an appropriate setting for a conversation. There should be privacy, adequate time to talk, and minimal distractions.
Always have a box of tissues within reach. Patients may become emotional upon hearing they have a hair disorder.
Do your homework. This not only means knowing your patients’ diagnoses well, but also researching accurate and reliable websites, pamphlets, and articles for your patients to reference. Patients often search their diagnoses on the Internet and, unsurprisingly, come across a bounty of inaccurate information. In our clinic, we frequently refer patients to the Cicatricial Alopecia Research Foundation (CARF, www.carfintl.org) or the National Alopecia Areata Foundation (www.naaf.org) websites, because we know the information on these websites is accurate and current.
Forgo using medical jargon, technical terms, or abbreviations. Explain the disease process in simplified terms that patients can understand. For example, an inflammatory cicatricial alopecia can be explained as “a condition where immune cells come up to the scalp and cause inflammation and irritation around the hair follicles, leading to scarring if the inflammation is not controlled with medications.”
Be honest. Several studies show that when patients who received bad news were surveyed about their experiences, they frequently appreciated honesty.^21-23 Patients need to have a good understanding of their disease state and their prognosis so that they can make an appropriate decision about their care and have realistic expectations from treatment.
Have some finesse. Honesty does not mean being too blunt. It is important to find the right balance between being honest yet encouraging. Patients also appreciate when their physicians show concern and compassion.²¹ Use phrases such as, “I know this is so difficult for you,” “hair is a very sensitive topic for many people, especially women,” or, “I understand how you can feel this way.”
Provide hope. Tell patients that everyone responds differently to treatment, with some patients having good hair regrowth and/or thickening of their existing hairs—and that you could be one of them. When discussing cicatricial alopecia, we often tell patients “though you have a form of scarring hair loss, it is possible that there may be hairs in the scalp that are unable to grow because of the surrounding inflammation. So you can see regrowth once the inflammation is decreased with the appropriate medications.” This helps provide the hope and motivation patients need to remain compliant with their therapy.
Focus on the positive. Remind patients there are treatment options. Even when treatment options do not provide regrowth, mention that they can at least suppress progression of hair loss or decrease scalp symptoms.
Have a plan in place that will best suit each patient’s lifestyle and financial means. Present options for treatment and mention the cost of these treatment options. Some patients may be willing to pay out-of-pocket for any treatment while others may not. We let our patients know that there are several available options and that if 1 medication or treatment plan fails, we can work together to come up with another plan. This delivers a message of teamwork and support, further easing our patients’ anxiety and strengthening their trust in us.