Craving, creating, and constructing comfort: insights and opportunities for technology in hospice

Hospice is a medical setting for patients with terminal illnesses where active treatment is withdrawn in favor of providing comfort and dignity at the end of life. Providing comfort extends beyond managing physical pain to include social, emotional, spiritual, and environmental aspects of care. We studied technology's role in achieving these multifaceted dimensions of comfort through interviews with 16 family members of past hospice patients. Comfort was an ongoing pursuit, requiring the involvement of diverse stakeholders; communication technologies were selectively chosen in service of this achievement. We provide opportunities and recommendations for technologies in hospice, including the need for varying degrees of richness and symmetry, and for support for life-affirming acts. To our knowledge, this constitutes the first study, in the CSCW and HCI literatures, of communication technology use during the final days of a person's life, with implications both for hospice and for the end of life more broadly.

[1]  G. Demiris,et al.  A systematic review of the evidence base for telehospice. , 2012, Telemedicine journal and e-health : the official journal of the American Telemedicine Association.

[2]  D. Klass,et al.  Continuing Bonds : New Understandings of Grief , 1996 .

[3]  N. Avis,et al.  Quality of life in advanced ovarian cancer: identifying specific concerns. , 1999, Journal of palliative medicine.

[4]  S. Showalter,et al.  Compassion Fatigue: What Is It? Why Does It Matter? Recognizing the Symptoms, Acknowledging the Impact, Developing the Tools to Prevent Compassion Fatigue, and Strengthen the Professional Already Suffering From the Effects , 2010, The American journal of hospice & palliative care.

[5]  Abigail Sellen,et al.  Technology heirlooms?: considerations for passing down and inheriting digital materials , 2012, CHI.

[6]  Sunny Consolvo,et al.  The CareNet Display: Lessons Learned from an In Home Evaluation of an Ambient Display , 2004, UbiComp.

[7]  David Clark,et al.  The changing model of palliative care , 2008 .

[8]  H. Thaler,et al.  Pain in ambulatory AIDS patients. II: Impact of pain on psychological functioning and quality of life , 1996, Pain.

[9]  G. Bonanno Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events? , 2008, The American psychologist.

[10]  Daniela Petrelli,et al.  FM radio: family interplay with sonic mementos , 2010, CHI.

[11]  S. Bloch,et al.  Family focused grief therapy: a randomized, controlled trial in palliative care and bereavement. , 2006, The American journal of psychiatry.

[12]  Jeffrey T. Hancock,et al.  I said your name in an empty room: grieving and continuing bonds on facebook , 2011, CHI.

[13]  George Demiris,et al.  Internet Use by Hospice Families and Providers: A Review , 2007, Journal of Medical Systems.

[14]  J Rhymes,et al.  Hospice care in America. , 1990, JAMA.

[15]  R. Kane,et al.  The role of hospice in reducing the impact of bereavement. , 1986, Journal of chronic diseases.

[16]  Peter C. Wright,et al.  Age and experience: ludic engagement in a residential care setting , 2010, Conference on Designing Interactive Systems.

[17]  Mary Beth Happ,et al.  Listening to the voiceless patient: case reports in assisted communication in the intensive care unit. , 2011, Journal of palliative medicine.

[18]  D. Wilkie,et al.  Effects of Massage on Pain Intensity, Analgesics and Quality of Life in Patients with Cancer Pain: A Pilot Study of a Randomized Clinical Trial Conducted Within Hospice Care Delivery , 2000, The Hospice journal.

[19]  A. Stewart,et al.  The concept of quality of life of dying persons in the context of health care. , 1999, Journal of pain and symptom management.

[20]  Jed R. Brubaker,et al.  "We will never forget you [online]": an empirical investigation of post-mortem myspace comments , 2011, CSCW.

[21]  K. Puntillo,et al.  Withdrawal of life support: intensive caring at the end of life. , 2002, JAMA.

[22]  Jodi Forlizzi,et al.  Digital artifacts as legacy: exploring the lifespan and value of digital data , 2013, CHI.

[23]  P. Clayton The sequelae and nonsequelae of conjugal bereavement. , 1979, The American journal of psychiatry.

[24]  D. Clark Total pain: the work of Cicely Saunders and the hospice movement , 2000 .

[25]  Carman Neustaedter,et al.  Intimacy in long-distance relationships over video chat , 2012, CHI.

[26]  R. McCann,et al.  Comfort care for terminally ill patients. The appropriate use of nutrition and hydration. , 1994, JAMA.

[27]  C. Demmer A National Survey of Hospice Bereavement Services , 2003 .

[28]  Thomas V. O'brien,et al.  From Cork to Budapest by Skype: living and dying , 2012, BMJ Supportive & Palliative Care.

[29]  S. Forbes,et al.  Quality of Life in Hospice Patients with Terminal Illness , 2004, Western journal of nursing research.

[30]  E. Wittenberg-Lyles,et al.  Social Work Role in Hospice Pain Management: A National Survey , 2009 .

[31]  Lorraine R. Buis,et al.  Emotional and Informational Support Messages in an Online Hospice Support Community , 2008, Computers, informatics, nursing : CIN.

[32]  Abigail Sellen,et al.  Passing on & putting to rest: understanding bereavement in the context of interactive technologies , 2010, CHI.

[33]  Elizabeth D. Mynatt,et al.  Digital family portraits: supporting peace of mind for extended family members , 2001, CHI.

[34]  Michael Massimi,et al.  Dying, death, and mortality: towards thanatosensitivity in HCI , 2009, CHI Extended Abstracts.

[35]  K. Gilbert,et al.  Dying, death, and grief in an online universe : for counselors and educators , 2012 .

[36]  P. Feldman,et al.  Informal Caregiving: Differential Experiences by Gender , 2002, Medical care.

[37]  Michael Massimi,et al.  Exploring remembrance and social support behavior in an online bereavement support group , 2013, CSCW.

[38]  N. Christakis,et al.  Factors considered important at the end of life by patients, family, physicians, and other care providers. , 2000, JAMA.

[39]  George Demiris,et al.  Home Internet Use among Hospice Service Recipients: Recommendations for Web-Based Interventions , 2007, Journal of Medical Systems.

[40]  D. Oliver,et al.  Social Work Role in Pain Management with Hospice Caregivers: A National Survey. , 2009, Journal of social work in end-of-life & palliative care.

[41]  J. Kutner,et al.  Feasibility of a telephone-based counseling program for informal caregivers of hospice patients. , 2011, Journal of palliative medicine.

[42]  A. Strauss,et al.  The discovery of grounded theory: strategies for qualitative research aldine de gruyter , 1968 .

[43]  Amy Clements-Cortés The use of music in facilitating emotional expression in the terminally ill , 2004, The American journal of hospice & palliative care.

[44]  A. Gafni,et al.  What matters most in end-of-life care: perceptions of seriously ill patients and their family members , 2006, Canadian Medical Association Journal.

[45]  Tobie Kerridge,et al.  The photostroller: supporting diverse care home residents in engaging with the world , 2011, CHI.

[46]  Richard Banks,et al.  Matters of life and death: locating the end of life in lifespan-oriented hci research , 2011, CHI.

[47]  Batya Friedman,et al.  Multi-lifespan information system design: a research initiative for the hci community , 2010, CHI.

[48]  Stuart Reeves,et al.  In dialogue: methodological insights on doing hci research in rwanda , 2012, CHI Extended Abstracts.