Holistic Oncology: A Healing Garden Guest Book

Transcription

1 Holistic Oncology: A Healing Garden Guest Book Sarah E. Belden, 1 William U. Shipley, 4 Jensie Shipley, 3 Katie D. Binda, 2 Richard T. Penson 1 Departments of Medicine, Hematology Oncology, 1 Social Work, 2 Volunteer Services, 3 and Radiation Oncology 4 at Massachusetts General Hospital, representing members of the Ulfelder Healing Garden Oversight Committee, Boston, Massachusetts, USA Correspondence: Richard T. Penson, M.D., M.R.C.P., Division of Hematology Oncology, Yawkey 9066, Massachusetts General Hospital, 32 Fruit Street, Boston MA 02114, USA. Telephone: ; Fax: ; rpenson@partners.org Received April 23, 2008; accepted for publication June 11, Disclosure: The content of this article has been reviewed by independent peer reviewers to ensure that it is balanced, objective, and free from commercial bias. No financial relationships relevant to the content of this article have been disclosed by the authors, planners, independent peer reviewers, or staff managers. Abstract Holistic care acknowledges the physical, psychological, social, and spiritual needs of patients. The MGH Cancer Center has promoted holistic care with the establishment of a healing garden on the roof of a new Yawkey Outpatient Care Building. Since 2005, the Ulfelder Healing Garden has been open to patients for quiet reflection and respite from the rigors of cancer and its treatment. We have audited visitors comments in a guest book. This survey provides an opportunity to monitor the personal feelings, observations, and reactions of visitors, and to assess the benefit of the garden. Content analysis of 1,653 entries revealed major psychological (48%), physical (27%), spiritual (16%), and social (9%) impacts of these visits. There was a strong emotional and psychological emphasis, and gratitude was the most common response (30%). Introduction Holistic care fosters compassion and supports hope during the struggle with a lifethreatening illness [1]. Addressing emotional distress requires tangible support in community or group settings and is now considered an important part of quality care [2 4]. While cancer survival or cure may not be improved by holistic interventions, quality of life may be profoundly influenced [5]. The Ulfelder Healing Garden at Massachusetts General Hospital (MGH) was created in 2005 as a respite for patients and their families and friends. This 6,300-square-foot garden overlooks the Charles River, which divides Boston from Cambridge (see Figure 1). It aims to provide a quiet place for reflection. The garden, which is on the 8 th floor roof of the Yawkey Center for Outpatient Care, includes an enclosed pavilion for year- 1

2 round use, a courtyard area, an eclectic garden with a pathway that winds past a Japanese fountain, granite sculptures, and bench seating (see Figure 2). It is a secluded sanctuary where patients can seek emotional and physical restoration. Visitors are encouraged to relax and enjoy the serenity that the garden offers. We were eager to gauge the reaction of visitors to the Healing Garden, and invited comments in a guest book. We asked visitors to share their thoughts, suggestions for improvement, or comments about their personal challenges or emotional well-being. Methods The data were abstracted from distinct entries, each entry consisting of a comment in the form of a phrase or sentence, obtained from the Healing Garden Guest Book. The book contained sheets that could be inserted and removed, and approximately 100 sheets were selected at random that have been filled throughout the months of October 2005 through June One thousand, six hundred, fifty-three comments were evaluated. The original source data were transcribed into electronic format to protect the integrity of the original documents. All data were anonymized to protect patient or visitor identity in line with Health Insurance Portability and Accountability Act of 1996 (HIPAA) guidelines [6]. Two researchers trained in qualitative methods of research analysis searched each entry individually to identify all units of analysis, which were defined as distinct words or phrases that conveyed a specific and singular meaning, idea, or concept encompassing the quality-of-life (QOL) framework [7]. The sample entries included a total of 19,237 words, with many duplicates. Of these words, 4,166 words and phrases were deemed significant. Significant words and phrases included nouns, adjectives, and verbs relating to descriptions of the overall experience in the healing garden. Insignificant words included words such as of, and, proper nouns, pronouns, etc. For example, the entry Thank you very much for your thoughtfulness. The garden is lovely, peaceful, and healing. More than you know has four significant words (thoughtfulness, lovely, peaceful, healing) and one significant phrase (thank you); the following words were considered to be modifiers of the primary descriptors: very much for your, the, is, and, more than you know. All words and phrases were analyzed and categorized by consensus, using the expertise of the other investigators, into the following four different QOL categories: psychological, physical, spiritual, and social well-being, following the models of Ferrell et al. [8] and Kornblith et al. [9] (Table 1). The frequency of each word and/or phrase was recorded and ranked. Psychological themes were defined as any type of mental or emotional response. This included personal and emotional interpretations as well as self-experience, such as adjectives used in descriptions of a psychological state or response. For example, when describing the garden, a word classified as psychological would include an intangible description and interpretation such as fantastic, loving, or peaceful. The psychological theme differed from the physical theme, which encompassed words relating to health and physical well-being or aspects of impersonal nature words such as green, bright, or beautiful. 2

3 Results The sample of comments consisted of 1,653 entries. An average (median = 7) of 10 words were analyzed per entry (range, 1 176). Of these entries, 4,166 words or phrases were deemed significant and were analyzed. Multiple themes were identified in most entries. Representative narratives to best reflect typical content of the book are included in Table 2. It was found that the garden impacted the visitors the most psychologically (48%), followed by a physical (27%), spiritual (16%), and social (9%) impact. The relative percentage of each QOL theme is represented in Figure 3. Table 3 shows the most common themes of each of the four QOL domains and their relative percentages. Psychological Of the 4,166 key words analyzed, 2,099 (50%) related to the psychological QOL domain, with the most frequent psychological theme being gratitude (i.e., thanks, thank you, thankfulness) at 612 occurrences (15%). The second and third most frequent themes were peacefulness and wonderful, recorded at 435 (10%) and 391 (9%) occurrences, respectively, and used when describing the garden, such as What a peaceful and beautiful place. Physical The guest book also contained 1,036 words and phrases (25%) related to the physical QOL domain. Beauty was the most common physical theme conveyed by guests (610 occurrences, 15%), which included words such as beautiful, lovely, and gorgeous used to describe the physical appearance of the garden. Patients also recorded comments relating to their treatment, using words such as cancer, tumor, or chemotherapy to describe the nature of their visit or their personal experiences. Treatment was the second most frequent physical theme, noted at 80 (2%) occurrences. Spiritual Religiosity or spirituality was represented in 730 (18%) of the 4,166 words and phrases. Of all the words and phrases within the spiritual theme, God was represented the most frequently (180 occurrences, 4%), which included Lord, Healer, and Jesus. Blessing was also found as a spiritual theme, recorded at 124 occurrences (3%). Bless this garden and this is a blessing were two common phrases used by guests. Guests often referred to the garden as an oasis (85 occurrences, 2%), using a myriad of words and phrases within this theme which included retreat, respite, refuge, paradise, haven, or escape, and was recorded as the third most frequent spiritual theme. Social Of the four QOL domains, visitors relayed themes of a social nature the least (301, 7%). Visitors wrote personal narratives to friends or family, with phrases relating to friends and family (i.e., mother, father, wife, brother, etc.) occurring at 118 instances (3%). Of these relationship key words, mother was the most prevalent followed by friend. Visit was the second most commonly used term, noted at 49 occurrences (1%), used in phrases such as I visit after every appointment, this is my X th visit, and I look forward to this visit. 3

4 Discussion Recorded comments in the Ulfelder Healing Garden Guest Book were overwhelmingly positive (98%). Half of the words and phrases analyzed were related to a psychological theme. Thus many visitors recording comments found that the garden had a positive psychological effect on their state of mind. Guests appeared to feel confident leaving behind testimony to the benefit they found in the quiet of the garden. The way in which the data were separated into categories had a direct effect on the results, so the method that was used for categorization may have created discrepancies in results. For many words, with some ambiguity as to which QOL category they belonged to, there was an emotional element, and this may have preferentially allocated more words or phrases to the psychological category. Although the personal biases of the investigators could clearly have influenced interpretation, there was general unanimity to decisions about categorical preference. The challenge lay in the ambiguity of how the QOL categories psychological, physical, social, and spiritual were defined as well as one s own personal interpretation of the words from the guest book. Cancer patients and families face an overwhelming and exhausting challenge with the disease and its treatment. There are times to celebrate and times of suffering, and all too often, an emotional burden that is hard to set down. In the busyness and business of contemporary high-tech healthcare, there is little time, and there are few places set aside to allow this to happen. The Ulfelder Healing Garden Guest Book has allowed visitors to express personal thoughts and feelings, and it stands as a memorial to human vulnerability and human resilience. Conclusion The Healing Garden Guest Book held many insights to major psychological, physical, spiritual, and social themes. There was a strong emotional and psychological emphasis, and many visitors identified their gratitude as the most common response. The guest book serves as an outlet for visitors to share personal feelings and significant observations in a beautiful and peaceful place. The eloquent and affirming entries stand in their own right as a tribute that to provide a thing of beauty is a worthy investment. It is our hope that other cancer centers will pursue the same end and provide a place of sanctuary and a particular place of healing to complement the work of medicine in modern hospitals. Acknowledgments We very much appreciate all of the comments from visitors to the Garden. Many thanks to Robert Laforteza for transcribing them and to social worker Evelyn Malkin, who identified the benefits of a garden and persevered, with the help of The Friends of the Massachusetts General Hospital Cancer Center, the cancer center staff and patients, the administration, Halvorson Landscape Design, and with the generous support of many families saw the project completed. It has been a privilege to see how much joy and healing it has brought to our community. 4

5 AUTHOR CONTRIBUTIONS Conception/design: Sarah E. Belden, William U. Shipley, Jensie Shipley, Katie D. Binda, Richard T. Penson Collection/assembly of data: Sarah E. Belden, Katie D. Binda Data analysis and interpretation: Sarah E. Belden, Katie D. Binda, Richard T. Penson Manuscript writing: Sarah E. Belden, Richard T. Penson Final approval of manuscript: Sarah E. Belden, William U. Shipley, Jensie Shipley, Katie D. Binda, Richard T. Penson References 1. Penson RT et al. Teams: Communication in multidisciplinary care. The Oncologist 2006;11: Holland JC, Bultz BD. The NCCN guideline for distress management: A case for making distress the sixth vital sign. J Natl Compr Canc Netw 2007;5: Velikova G, Stark D, Selby P. Quality of life instruments in oncology. Eur J Cancer 1999;35: Spiegel D. Mind matters group therapy and survival in breast cancer. N Engl J Med 2001;345: Nuland S. How We Die: Reflections on Life's Final Chapter. New York: Vintage Books USA, Health Insurance Portability and Accountability Act of HIPAA, Title II, 45 CFR Part 160 and Subparts A and E of Part Miles M, Huberman A. Qualitative data analysis: An expanded sourcebook. Thousand Oaks, CA: Sage Publishing, Ferrell B, Smith SL, Cullinane CA et al. Psychological well being and quality of life in ovarian cancer survivors. Cancer 2003;98: Kornblith AB, Thaler HT, Wong G et al. Quality of life of women with ovarian cancer. Gynecol Oncol 1995;59:

6 Table 1. A Priori Quality of Life Categories and Subgroups Psychological Physical Spiritual Social Gratitude Health Religiosity Activity & Motion Mental attitude & Physical well-being Spiritual life Social support Awareness Feeling & response Visible observation Haven Action or Interaction Emotional interpretations Environmental elements Meditation Roles & Relationships Modified from the models of Ferrell et al. [8] and Kornblith et al. [9]. Table 2. Representative Guest Book excerpts. My heart is made whole sitting here. Thank you. What a beautiful place: the sights, the sounds, the smells, a place in the sun. I love your beautiful touches. May I live forever. Peace. Place. Love. Light. Life. In the infinity of who we are all is perfect whole and complete. Thanks. I took my shoes off and walked in the cool wet grass You must heal yourselves. Feed the positive. Starve the negative. Love carelessly. Love one and all. Hope and desperation. Thank you to the people who dreamed of this. God still lives and dwells amongst us. Hope is alive and God lives. Amen. In healing we find God s lands. In healing we discover love and peace. In healing we discover who we truly are. He who sleeps on the floor cannot fall off the bed. Thank you for the awe inspiring view, the peaceful landscape, the peace and quite respect. I wish my mother could have seen and experienced this gift in her human form. Words and phrases chosen to illustrate Guest Book content. Punctuation added for clarity. 6

7 Table 3. Most common themes categorized by quality of life domain. Psychological 2,033 (48%) Physical 1,110 (27%) Spiritual 656 (16%) Social 367 (9%) Thankfulness % Beauty % God % Relationships % (family, friend) Peaceful % Healing* 74 7% Blessing % Relaxation 66 18% Wonderful % Cancer 80 7% Oasis 85 13% Visit 49 13% Love 168 8% Life 55 5% Prayer 67 10% Reflect/ponder 26 7% Thought 69 3% Nature 40 4% Hope 66 10% Gift 24 7% Enjoyment 48 2% Silence 31 3% Spirit 36 5% Memory or 24 7% remembrance Therapeutic 47 2% Treatment 28 3% Heavenly 29 4% Miss 16 4% Happiness 43 2% Heart 24 2% Meditation 18 3% Sit/sitting 13 4% Feelings 36 2% Well/ 24 2% Soul 18 3% Walk 10 3% Wellness Special 27 1% Survivor 20 2% Angel 5 1% Wish 9 2% Other 156 6% Other % Other 28 4% Other 12 3% *Healing was not used in phrase denoting title or aspects of the garden such as healing stones. 7

8 Figure 1. The Ulfelder Healing Garden. View of the Ulfelder Healing Garden at Massachusetts General Hospital facing west over the Charles River with the city of Boston in the background. Figure 2. Architectural plan of the Ulfelder Healing Garden at Massachusetts General Hospital. 8

9 Figure 3. Percentage of quality of life themes in Healing Garden Guest Book. Spiritual 16% Physical 27% Social 9% Psychological 48% 9