Downloaded from http://spcare.bmj.com/ on May 29, 2015 - Published by group.bmj.com
Case report
From Cork to Budapest by Skype: living and dying Jodie E Battley,1 Lucy Balding,2 Oonagh Gilligan,3 Catherine O’Connell,4 Tony O’Brien2 1Department
of Medical Oncology, Mercy University Hospital, Cork, Ireland 2Department of Palliative Medicine, Marymount University Hospice, Cork, Ireland 3Department of Haematology, Cork University Hospital, Cork, Ireland 4 Department of Palliative Medicine, Cork University Hospital, Cork, Ireland Correspondence to Jodie E Battley, Mercy University Hospital, Medical Oncology, Grenville Place, Cork, Ireland; [email protected] Received 5 February 2012 Accepted 24 February 2012 Published Online First 31 March 2012
ABSTRACT Effective communication is a prerequisite to the delivery of good palliative care. The increasing use of webbased technologies and social media challenges us to reassess traditional communication styles and to define appropriate applications of evolving technologies. The use of Skype, blogging and webcams by patients in our hospitals and hospices is increasing. As illustrated in this case, the availability of such technology enables patients and families to communicate across wide geographical boundaries. This has particular advantages in situations where family members cannot routinely attend at the hospital because of other commitments or distance. The authors report on the varying use of Skype videotelephony over the course of a cancer patient’s illness from the initial treatment phase through to the final days and hours of life. The benefits and challenges of using such technologies in a hospital setting and particularly in end-of-life circumstances are discussed.
CASE REPORT Following the birth of her second child, Julia, (names altered to protect confidentiality) a 27-year-old Hungarian national living in Ireland, presented to hospital in early 2009 with general malaise. She was noted to have a markedly abnormal blood fi lm, and subsequent investigations confi rmed the diagnosis of a B cell non-Hodgkin’s lymphoma. Despite an initial response to chemotherapy, she relapsed later that year with metastatic brain disease. Julia had been living in Ireland for several years with her partner Daniel and her two children (aged 5 years and 6 months). Julia’s immediate family was based in Hungary and, consequently, her social and family supports in Ireland were limited. Julia’s social isolation was further compounded by her limited fluency in English and her prolonged periods of hospitalisation. In the hospital, the couple began to use Skype from their own personal laptops, using a mobile broadband connection and webcam. This provided a useful and effective means for Julia to interact with her husband and children in Cork and also enabled her to be in daily contact with her family in Hungary. From a clinical perspective, Daniel was able to act as a translator between Julia and members of the medical team without being present on the ward. Over a short period of time, Julia’s condition continued to deteriorate. Daniel and Julia indicated that they wished to get married and this request was facilitated in the hospital chapel. This moving and intimate ceremony was attended by
168
Julia’s two daughters, her mother and brother who had travelled from Hungary, and several staff members. The ceremony was not broadcast on Skype. Following the wedding, it was decided that Julia’s children should return to Hungary to the care of grandparents and extended family members. As Julia’s condition progressively weakened, Daniel was ever present at her hospital bed. It soon became apparent that Julia was beginning to die. Over the following days, a constant Skype connection was maintained between Julia’s hospital room and her mother’s kitchen in Budapest. Julia died 1 week after her wedding with her husband at her bedside. Her mother and Hungarian family were very much in attendance through the medium of Skype. Daniel very much valued this on-going support, yet was concerned not to overburden Julia’s mother. He recalls: Julia’s mum was actually watching on Skype all the sad happenings, but I do remember what I was thinking in the very moment she gave her last breath. I thought, no mother deserves to see the death of her child…I shut the laptop off immediately.
DISCUSSION The increasing use of web-based technologies and social media challenges us to reassess traditional communication styles and to defi ne appropriate applications of evolving technologies.1 Skype, a division of Microsoft Corp., is a software application founded in 2003 that allows users to make audio-visual calls over the internet. Skype video conferencing between two users was introduced in January 2006. Calls to other users within the Skype service are free. Available in 29 languages, Skype boasted 663 million registered users as of September 2011, with up to 30 million users online at peak times. 2 3 As communication technologies grow, the use of software such as Skype and blogging by patients in our hospitals and hospices is increasing. Current published literature relates largely to video-telephony use in the support of patients at home.4–6 Although communication by patients with friends and family via Skype or other telephony systems is anecdotally quite common, its use at the end of life is not widely documented. A recent online newspaper article reports a dying mother being able to virtually attend her daughter’s wedding ceremony via the use of Skype.7 Our report is unique in that it describes the use of Skype over a prolonged period of time, throughout the last weeks of Julia’s life up to, but not including, the moment of her death.
BMJ Supportive & Palliative Care 2012;2:168–169. doi:10.1136/bmjspcare-2012-000210
Downloaded from http://spcare.bmj.com/ on May 29, 2015 - Published by group.bmj.com
Case report The role of Skype varied during Julia’s disease trajectory. Initially, the family used Skype intermittently and it was primarily used to enable contact between Julia and her children in Ireland. Because of isolation policies on the ward, the children were unable to visit frequently. Skype enabled Julia to read bedtime stories to her children, help with their homework and to feel present with them during their summer holidays at home in Ireland. This served to sustain and support her role as a mother and ensured that she was not prematurely prevented from performing this important function. Over time, Julia increasingly used Skype to maintain contact with family and friends in Hungary. The use of Skype to overcome geographical boundaries is not a new phenomenon. At the University of California, San Francisco, the Children’s Hospital and Medical Center began a partnership with Skype in April 2010 to help connect hospital inpatients with family and friends.8 This was the fi rst such collaboration between Skype and a hospital and was initially devised during the restrictions imposed by the 2009 winter flu season. The hospital staff continue to fi nd ‘compelling applications’ for Skype and, particularly, promote its use among patients requiring isolation, such as those with cystic fibrosis and immune-compromised patients. Julia’s husband Daniel spoke positively of his experience with Skype. Skype is extremely important; it became a part of our life, just like a mobile phone. The most important thing was for the staff to communicate with my wife, to get the answers to their questions, to understand each other, and Skype was just the perfect tool to do it. They could see me, hear me, so could I…we could talk. Staff members also commented on the benefits of Skype technology and did not fi nd it too intrusive. Frequently, staff observed Julia’s mother and her children in the family home in Hungary. Julia was evidently greatly comforted by interacting with her children. Staff members noted that ‘the children were able to be there, but not be there’ during this difficult time. Staff expressed the hope that maintaining this connection may have eased the children’s transition back to Hungary. As Julia’s condition weakened and she moved ever closer to her death, the presence of family in the room through Skype became an increasingly valuable support to Daniel. He reported feeling less alone because of this connection. In her fi nal days, staff observed Julia’s mother sitting by her bed the whole time, often with tears in her eyes. In Daniel’s words, ‘the internet and Skype made Julia’s last couple of months easier and happier’. As with all new technologies, we will need some time to determine how best to exploit their capabilities in a safe and appropriate fashion. The potential implications of having an open video link between a clinical care environment and a remote site are considerable, not least in terms of patient and staff privacy. The fact that the laptop is so unobtrusive means that we can very easily forget that it is there. Clearly, we have no control over who has access to the images that are relayed.
BMJ Supportive & Palliative Care 2012;2:168–169. doi:10.1136/bmjspcare-2012-000210
In Julia’s case, the laptop screen was closed during periods of personal or intimate care. This is equivalent to asking a visitor to leave the room in normal circumstances. However, staff reported that they quickly forgot about the Skype connection and identified the risk of providing personal care or having a confidential discussion when the Skype connection was active. We must develop comprehensive and robust guidelines governing the use of Skype and other information technologies in the healthcare environment. All persons entering a room where Skype is live must be alerted to this fact in advance. The use of Skype in rooms with multiple occupancy presents particular challenges in terms of safeguarding the privacy and confidentiality of other patients and visitors. The use of a broadband connection to support Skype applications may have fi nancial implications for patients and families. While Wi-Fi is available in many different public locations in Ireland, it is not yet widely available (either free, subsidised or for purchase) in most major hospitals or hospices at the present time.9 Patients, therefore, have to provide their own laptop and mobile internet connection. This is the fi rst published report describing the maintenance of a continuous Skype connection during the last days and hours of a patient’s life almost up to the moment of death. Its use was considered by healthcare professionals and family to have enriched and supported the provision of care. It helped to optimise communication within the family, among their friends and with staff in the hospital. As healthcare professionals, we should welcome the development and use of such technologies and recognise the many potential benefits to patients and families. These applications are of particular benefit to patients who are nursed in isolation units and those with family members who are at a remote geographical location or who cannot visit because of infi rmity or visiting restrictions. Subject to appropriate safeguards, we should embrace the many possibilities that social technology can offer in healthcare. Competing interests None. Patient consent Obtained. Provenance and peer review Not commissioned; internally peer reviewed.
REFERENCES 1 2. 3. 4.
5.
6. 7. 8.
9.
Cleary J. Jumping into the world of social media with Palliative Medicine. Palliative Medicine 2011;25:611–12. Wikipedia. Skype, 2011. http://en.wikipedia.org/wiki/Skype. Gigaom. 2010. http://gigaom.com/2010/04/20/skype-94-2009-number/. Bensink ME, Armfield NR, Pinkerton R, et al. Using videotelephony to support paediatric oncology-related palliative care in the home: from abandoned RCT to acceptability study. Palliat Med 2009;23:228–237. Hori M, Kubota M, Ando K, et al. (The effect of videophone communication (with skype and webcam)for elderly patients with dementia and their caregivers). Gan To Kagaku Ryoho 2009;36(Suppl 1):36–38. Oliver DP, Washington KT, Wittenberg-Lyles E, et al. ‘They’re part of the team’: participant evaluation of the ACTIVE intervention. Palliat Med 2009;23:549–555. Huffington Post. November 2011 http://www.huffingtonpost.com/2011/08/18/ skype-wedding-dying-mother _ n _ 930134.html#s332788. Vidinsky K. UCSF partners with Skype to connect patients with family and friends, 2010. http://www.ucsf.edu/news/2010/04/4399/ucsf-partners-skype-connectpatients-family-friends.. Battley J. Telephone Audit of WIFI Access in Healthcare Facilities in Ireland. (Submitted for publication August 2011).
169
Downloaded from http://spcare.bmj.com/ on May 29, 2015 - Published by group.bmj.com
From Cork to Budapest by Skype: living and dying Jodie E Battley, Lucy Balding, Oonagh Gilligan, Catherine O'Connell and Tony O'Brien BMJ Support Palliat Care 2012 2: 168-169 originally published online March 31, 2012
doi: 10.1136/bmjspcare-2012-000210 Updated information and services can be found at: http://spcare.bmj.com/content/2/2/168
These include:
References Email alerting service
This article cites 4 articles, 3 of which you can access for free at: http://spcare.bmj.com/content/2/2/168#BIBL Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
Case report
From Cork to Budapest by Skype: living and dying Jodie E Battley,1 Lucy Balding,2 Oonagh Gilligan,3 Catherine O’Connell,4 Tony O’Brien2 1Department
of Medical Oncology, Mercy University Hospital, Cork, Ireland 2Department of Palliative Medicine, Marymount University Hospice, Cork, Ireland 3Department of Haematology, Cork University Hospital, Cork, Ireland 4 Department of Palliative Medicine, Cork University Hospital, Cork, Ireland Correspondence to Jodie E Battley, Mercy University Hospital, Medical Oncology, Grenville Place, Cork, Ireland; [email protected] Received 5 February 2012 Accepted 24 February 2012 Published Online First 31 March 2012
ABSTRACT Effective communication is a prerequisite to the delivery of good palliative care. The increasing use of webbased technologies and social media challenges us to reassess traditional communication styles and to define appropriate applications of evolving technologies. The use of Skype, blogging and webcams by patients in our hospitals and hospices is increasing. As illustrated in this case, the availability of such technology enables patients and families to communicate across wide geographical boundaries. This has particular advantages in situations where family members cannot routinely attend at the hospital because of other commitments or distance. The authors report on the varying use of Skype videotelephony over the course of a cancer patient’s illness from the initial treatment phase through to the final days and hours of life. The benefits and challenges of using such technologies in a hospital setting and particularly in end-of-life circumstances are discussed.
CASE REPORT Following the birth of her second child, Julia, (names altered to protect confidentiality) a 27-year-old Hungarian national living in Ireland, presented to hospital in early 2009 with general malaise. She was noted to have a markedly abnormal blood fi lm, and subsequent investigations confi rmed the diagnosis of a B cell non-Hodgkin’s lymphoma. Despite an initial response to chemotherapy, she relapsed later that year with metastatic brain disease. Julia had been living in Ireland for several years with her partner Daniel and her two children (aged 5 years and 6 months). Julia’s immediate family was based in Hungary and, consequently, her social and family supports in Ireland were limited. Julia’s social isolation was further compounded by her limited fluency in English and her prolonged periods of hospitalisation. In the hospital, the couple began to use Skype from their own personal laptops, using a mobile broadband connection and webcam. This provided a useful and effective means for Julia to interact with her husband and children in Cork and also enabled her to be in daily contact with her family in Hungary. From a clinical perspective, Daniel was able to act as a translator between Julia and members of the medical team without being present on the ward. Over a short period of time, Julia’s condition continued to deteriorate. Daniel and Julia indicated that they wished to get married and this request was facilitated in the hospital chapel. This moving and intimate ceremony was attended by
168
Julia’s two daughters, her mother and brother who had travelled from Hungary, and several staff members. The ceremony was not broadcast on Skype. Following the wedding, it was decided that Julia’s children should return to Hungary to the care of grandparents and extended family members. As Julia’s condition progressively weakened, Daniel was ever present at her hospital bed. It soon became apparent that Julia was beginning to die. Over the following days, a constant Skype connection was maintained between Julia’s hospital room and her mother’s kitchen in Budapest. Julia died 1 week after her wedding with her husband at her bedside. Her mother and Hungarian family were very much in attendance through the medium of Skype. Daniel very much valued this on-going support, yet was concerned not to overburden Julia’s mother. He recalls: Julia’s mum was actually watching on Skype all the sad happenings, but I do remember what I was thinking in the very moment she gave her last breath. I thought, no mother deserves to see the death of her child…I shut the laptop off immediately.
DISCUSSION The increasing use of web-based technologies and social media challenges us to reassess traditional communication styles and to defi ne appropriate applications of evolving technologies.1 Skype, a division of Microsoft Corp., is a software application founded in 2003 that allows users to make audio-visual calls over the internet. Skype video conferencing between two users was introduced in January 2006. Calls to other users within the Skype service are free. Available in 29 languages, Skype boasted 663 million registered users as of September 2011, with up to 30 million users online at peak times. 2 3 As communication technologies grow, the use of software such as Skype and blogging by patients in our hospitals and hospices is increasing. Current published literature relates largely to video-telephony use in the support of patients at home.4–6 Although communication by patients with friends and family via Skype or other telephony systems is anecdotally quite common, its use at the end of life is not widely documented. A recent online newspaper article reports a dying mother being able to virtually attend her daughter’s wedding ceremony via the use of Skype.7 Our report is unique in that it describes the use of Skype over a prolonged period of time, throughout the last weeks of Julia’s life up to, but not including, the moment of her death.
BMJ Supportive & Palliative Care 2012;2:168–169. doi:10.1136/bmjspcare-2012-000210
Downloaded from http://spcare.bmj.com/ on May 29, 2015 - Published by group.bmj.com
Case report The role of Skype varied during Julia’s disease trajectory. Initially, the family used Skype intermittently and it was primarily used to enable contact between Julia and her children in Ireland. Because of isolation policies on the ward, the children were unable to visit frequently. Skype enabled Julia to read bedtime stories to her children, help with their homework and to feel present with them during their summer holidays at home in Ireland. This served to sustain and support her role as a mother and ensured that she was not prematurely prevented from performing this important function. Over time, Julia increasingly used Skype to maintain contact with family and friends in Hungary. The use of Skype to overcome geographical boundaries is not a new phenomenon. At the University of California, San Francisco, the Children’s Hospital and Medical Center began a partnership with Skype in April 2010 to help connect hospital inpatients with family and friends.8 This was the fi rst such collaboration between Skype and a hospital and was initially devised during the restrictions imposed by the 2009 winter flu season. The hospital staff continue to fi nd ‘compelling applications’ for Skype and, particularly, promote its use among patients requiring isolation, such as those with cystic fibrosis and immune-compromised patients. Julia’s husband Daniel spoke positively of his experience with Skype. Skype is extremely important; it became a part of our life, just like a mobile phone. The most important thing was for the staff to communicate with my wife, to get the answers to their questions, to understand each other, and Skype was just the perfect tool to do it. They could see me, hear me, so could I…we could talk. Staff members also commented on the benefits of Skype technology and did not fi nd it too intrusive. Frequently, staff observed Julia’s mother and her children in the family home in Hungary. Julia was evidently greatly comforted by interacting with her children. Staff members noted that ‘the children were able to be there, but not be there’ during this difficult time. Staff expressed the hope that maintaining this connection may have eased the children’s transition back to Hungary. As Julia’s condition weakened and she moved ever closer to her death, the presence of family in the room through Skype became an increasingly valuable support to Daniel. He reported feeling less alone because of this connection. In her fi nal days, staff observed Julia’s mother sitting by her bed the whole time, often with tears in her eyes. In Daniel’s words, ‘the internet and Skype made Julia’s last couple of months easier and happier’. As with all new technologies, we will need some time to determine how best to exploit their capabilities in a safe and appropriate fashion. The potential implications of having an open video link between a clinical care environment and a remote site are considerable, not least in terms of patient and staff privacy. The fact that the laptop is so unobtrusive means that we can very easily forget that it is there. Clearly, we have no control over who has access to the images that are relayed.
BMJ Supportive & Palliative Care 2012;2:168–169. doi:10.1136/bmjspcare-2012-000210
In Julia’s case, the laptop screen was closed during periods of personal or intimate care. This is equivalent to asking a visitor to leave the room in normal circumstances. However, staff reported that they quickly forgot about the Skype connection and identified the risk of providing personal care or having a confidential discussion when the Skype connection was active. We must develop comprehensive and robust guidelines governing the use of Skype and other information technologies in the healthcare environment. All persons entering a room where Skype is live must be alerted to this fact in advance. The use of Skype in rooms with multiple occupancy presents particular challenges in terms of safeguarding the privacy and confidentiality of other patients and visitors. The use of a broadband connection to support Skype applications may have fi nancial implications for patients and families. While Wi-Fi is available in many different public locations in Ireland, it is not yet widely available (either free, subsidised or for purchase) in most major hospitals or hospices at the present time.9 Patients, therefore, have to provide their own laptop and mobile internet connection. This is the fi rst published report describing the maintenance of a continuous Skype connection during the last days and hours of a patient’s life almost up to the moment of death. Its use was considered by healthcare professionals and family to have enriched and supported the provision of care. It helped to optimise communication within the family, among their friends and with staff in the hospital. As healthcare professionals, we should welcome the development and use of such technologies and recognise the many potential benefits to patients and families. These applications are of particular benefit to patients who are nursed in isolation units and those with family members who are at a remote geographical location or who cannot visit because of infi rmity or visiting restrictions. Subject to appropriate safeguards, we should embrace the many possibilities that social technology can offer in healthcare. Competing interests None. Patient consent Obtained. Provenance and peer review Not commissioned; internally peer reviewed.
REFERENCES 1 2. 3. 4.
5.
6. 7. 8.
9.
Cleary J. Jumping into the world of social media with Palliative Medicine. Palliative Medicine 2011;25:611–12. Wikipedia. Skype, 2011. http://en.wikipedia.org/wiki/Skype. Gigaom. 2010. http://gigaom.com/2010/04/20/skype-94-2009-number/. Bensink ME, Armfield NR, Pinkerton R, et al. Using videotelephony to support paediatric oncology-related palliative care in the home: from abandoned RCT to acceptability study. Palliat Med 2009;23:228–237. Hori M, Kubota M, Ando K, et al. (The effect of videophone communication (with skype and webcam)for elderly patients with dementia and their caregivers). Gan To Kagaku Ryoho 2009;36(Suppl 1):36–38. Oliver DP, Washington KT, Wittenberg-Lyles E, et al. ‘They’re part of the team’: participant evaluation of the ACTIVE intervention. Palliat Med 2009;23:549–555. Huffington Post. November 2011 http://www.huffingtonpost.com/2011/08/18/ skype-wedding-dying-mother _ n _ 930134.html#s332788. Vidinsky K. UCSF partners with Skype to connect patients with family and friends, 2010. http://www.ucsf.edu/news/2010/04/4399/ucsf-partners-skype-connectpatients-family-friends.. Battley J. Telephone Audit of WIFI Access in Healthcare Facilities in Ireland. (Submitted for publication August 2011).
169
Downloaded from http://spcare.bmj.com/ on May 29, 2015 - Published by group.bmj.com
From Cork to Budapest by Skype: living and dying Jodie E Battley, Lucy Balding, Oonagh Gilligan, Catherine O'Connell and Tony O'Brien BMJ Support Palliat Care 2012 2: 168-169 originally published online March 31, 2012
doi: 10.1136/bmjspcare-2012-000210 Updated information and services can be found at: http://spcare.bmj.com/content/2/2/168
These include:
References Email alerting service
This article cites 4 articles, 3 of which you can access for free at: http://spcare.bmj.com/content/2/2/168#BIBL Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
