Development of A User-Centered Design Framework for Palliative and Hospice Care Patients for a Better Quality of Life Experience
Keywords:End-of-Life care, user centred design, palliative and hospice, leave no one behind, tailored spaces, quality-of-life,
Goal Three of the Sustainable Development Goals emphasizes the concept of “leaving no one behind”; a model for inclusivity and coherence. Amongst those that are often “left behind” are patients at the end stage of their life due to a terminal illness or a medical diagnosis. These are often left to die without thought to the quality of life that they receive before their demise, and many experience this stage at home due to fear of expenses, or in a best-case scenario at a hospital to help alleviate or manage pain. In many places worldwide, this is where palliative and hospice care come in and focus on the End-of-Life care provided to patients who fit the criteria.
The number of architecture and design related studies in this field are not numerous, and those that are there do not focus on the patient as a user with rights, but merely as a patient that is there. The concept of a user-centered design is forgotten in midst of all the pain and suffering of all concerned, namely, the patient, his beloved, and his caregivers. However, focusing on this nexus at the core of the design project may help promote this painful and stressful time in life and induce serenity and acceptance in a time that is often dark and ominous. This research aims to develop a design framework for places that deal with End-of-Life care and how to provide a better quality of End-of-Life experience for terminally ill patients.
Abdallah, C. G., & Geha, P. (2017). Chronic Pain and Chronic Stress: Two Sides of the Same Coin? Why Stress and Pain? Chronic Stress, 1, 1–10. https://doi.org/10.1177/2470547017704763
Abdel-Razek, S. A., Marie, H. S., Alshehri, A., & Elzeki, O. M. (2022). Energy Efficiency through the Implementation of an AI Model to Predict Room Occupancy Based on Thermal Comfort Parameters. Sustainability (Switzerland), 14(13). https://doi.org/10.3390/su14137734
Bain, K. T., & Weschules, D. J. (2007). Medication Inappropriateness for Older Adults Receiving Hospice Care: A Pilot Survey. The Consultant Pharmacist, 22(11), 926–934. https://doi.org/10.4140/tcp.n.2007.926
Bartlett, L., Buscot, M.-J., Bindoff, A., Chambers, R., & Hassed, C. (2021). Mindfulness Is Associated With Lower Stress and Higher Work Engagement in a Large Sample of MOOC Participants. Frontiers in Psychology, 12. https://doi.org/10.3389/fpsyg.2021.724126
Blakey, S. M., & Abramowitz, J. S. (2017). Psychological Predictors of Health Anxiety in Response to the Zika Virus. Journal of Clinical Psychology in Medical Settings, 24(3–4), 270–278. https://doi.org/10.1007/s10880-017-9514-y
Boucher, N. A., & Johnson, K. S. (2021). Cultivating Cultural Competence: How Are Hospice Staff Being Educated to Engage Racially and Ethnically Diverse Patients? American Journal of Hospice and Palliative Medicine®, 38(2), 169–174. https://doi.org/10.1177/1049909120946729
Brennan, F. (2007). Palliative Care as an International Human Right. Journal of Pain and Symptom Management, 33(5), 494–499. https://doi.org/10.1016/j.jpainsymman.2007.02.022
Connellan, K., Gaardboe, M., Riggs, D., Due, C., Reinschmidt, A., & Mustillo, L. (2013). Stressed Spaces: Mental Health and Architecture. HERD: Health Environments Research & Design Journal, 6(4), 127–168. https://doi.org/10.1177/193758671300600408
Dy, S. M., Shugarman, L. R., Lorenz, K. A., Mularski, R. A., & Lynn, J. (2008). A Systematic Review of Satisfaction with Care at the End of Life. Journal of the American Geriatrics Society, 56.
Eaton, N. (2008). ‘I don’t know how we coped before’: a study of respite care for children in the home and hospice. Journal of Clinical Nursing, 17(23), 3196–3204. https://doi.org/10.1111/j.1365-2702.2008.02630.x
Eklund, K., Wilhelmson, K., Gustafsson, H., Landahl, S., & Dahlin-Ivanoff, S. (2013). One-year outcome of frailty indicators and activities of daily living following the randomised controlled trial; “Continuum of care for frail older people.” BMC Geriatrics, 13(1), 76. https://doi.org/10.1186/1471-2318-13-76
El-Jawahri, A., Greer, J. A., & Temel, J. S. (2011). Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. The Journal of Supportive Oncology, 9(3), 87–94. https://doi.org/10.1016/j.suponc.2011.03.003
Ferrante, T., & Villani, T. (2021). Environmental Physical and Perceived Quality in Hospice. HERD: Health Environments Research & Design Journal, 14(4), 324–338. https://doi.org/10.1177/19375867211028160
Feuerstein, M. (2007). Encyclopedia of Pain. Encyclopedia of Pain, October. https://doi.org/10.1007/978-3-540-29805-2
Gawande, A. A. (2014). Being mortal : illness, medicine and what matters in the end.
Gerlach, L. B., Fashaw, S., Strominger, J., Ogarek, J., Zullo, A. R., Daiello, L. A., Teno, J., Shireman, T. I., & Bynum, J. P. W. (2021). Trends in antipsychotic prescribing among long‐term care residents receiving hospice care. Journal of the American Geriatrics Society, 69(8), 2152–2162. https://doi.org/10.1111/jgs.17172
Global Directory of Palliative Care Institutions and Organizations. (n.d.). Retrieved June 10, 2022, from https://hospicecare.com/global-directory-of-providers-organizations/
Gola, M., Francalanza, P. C., Galloni, G., Pagella, B., & Capolongo, S. (2016). Architectures for paediatric palliative care: how to improve quality of life and environmental well-being. Annali Dell’Istituto Superiore Di Sanita, 52(1), 48–55. https://doi.org/10.4415/ann_16_01_10
Goldenheim, A., Oates, D., Parker, V., Russell, M., Winter, M., & Silliman, R. A. (2014). Rehospitalization of Older Adults Discharged to Home Hospice Care. Journal of Palliative Medicine, 17(7), 841–844. https://doi.org/10.1089/jpm.2013.0224
Goyal, M., Singh, S., Sibinga, E. M. S., Gould, N. F., Rowland-Seymour, A., Sharma, R., Berger, Z., Sleicher, D., Maron, D. D., Shihab, H. M., Ranasinghe, P. D., Linn, S., Saha, S., Bass, E. B., & Haythornthwaite, J. A. (2014). Meditation Programs for Psychological Stress and Well-being A Systematic Review and Meta-analysis. JAMA Intern Med, 174(3), 357–368. https://doi.org/10.1001/jamainternmed.2013.13018
Hearn, J., & Higginson, I. J. (1998). Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliative Medicine, 12(5), 317–332. https://doi.org/10.1191/026921698676226729
Higginson, I. J., & Evans, C. J. (2010). What Is the Evidence That Palliative Care Teams Improve Outcomes for Cancer Patients and Their Families? The Cancer Journal, 16, 423–435.
Higginson, I. J., Finlay, I. G., Goodwin, D. M., Hood, K., Edwards, A. G. K., Cook, A., Douglas, H. R., & Normand, C. E. (2003). Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? Journal of Pain and Symptom Management, 25(2), 150–168. https://doi.org/10.1016/s0885-3924(02)00599-7
Innes, K. E., Selfe, T. K., Brown, C. J., Rose, K. M., & Thompson-Heisterman, A. (2012). The Effects of Meditation on Perceived Stress and Related Indices of Psychological Status and Sympathetic Activation in Persons with Alzheimer’s Disease and Their Caregivers: A Pilot Study. 2012. https://doi.org/10.1155/2012/927509
Kane, R. L., Wales, J., Bernstein, L., Leibowitz, A., & Kaplan, S. (1984). A randomised controlled trial of hospice care. Lancet (London, England), 1(8382), 890–894. https://doi.org/10.1016/s0140-6736(84)91349-7
Kohara, H., Ueoka, H., Takeyama, H., Murakami, T., & Morita, T. (2005). Sedation for Terminally Ill Patients with Cancer with Uncontrollable Physical Distress. Journal of Palliative Medicine, 8(1), 20–25. https://doi.org/10.1089/jpm.2005.8.20
Maddux, R. E., Daukantaité, D., & Tellhed, U. (2018). The effects of yoga on stress and psychological health among employees: an 8- and 16-week intervention study. Anxiety, Stress and Coping, 31(2), 121–134. https://doi.org/10.1080/10615806.2017.1405261
Mohammed, W. A., Pappous, A., & Sharma, D. (2018). Effect of Mindfulness Based Stress Reduction (MBSR) in Increasing Pain Tolerance and Improving the Mental Health of Injured Athletes. Frontiers in Psychology, 9. https://doi.org/10.3389/fpsyg.2018.00722
Morris}, J. N., & Hardman, A. E. (1997). Walking to Health. In Sports Med (Vol. 23, Issue 5).
Mularski, R. A., Dy, S. M., Shugarman, L. R., Wilkinson, A. M., Lynn, J., Shekelle, P. G., Morton, S. C., Sun, V. C., Hughes, R. G., Hilton, L. K., Maglione, M., Rhodes, S. L., Rolon, C., & Lorenz, K. A. (2007). A systematic review of measures of end-of-life care and its outcomes. Health Services Research, 42(5), 1848–1870. https://doi.org/10.1111/j.1475-6773.2007.00721.x
Newman, L. (2004). Elisabeth Kübler-Ross. BMJ : British Medical Journal, 329(7466), 627. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC516672/
Ouf, T. A., Makram, A., & Abdel Razek, S. A. (2021). Design Indicators Based on Nature and Social Interactions to Enhance Wellness for Patients in Healthcare Facilities. In F. Trapani, N. Mohareb, F. Rosso, D. Kolokotsa, S. Maruthaveeran, & M. Ghoneem (Eds.), Advanced Studies in Efficient Environmental Design and City Planning (pp. 449–461). Springer International Publishing.
Palliative Care. (2020). Fact Sheet. https://www.who.int/news-room/fact-sheets/detail/palliative-care
Partinico, M., Corà, A., Ghisi, M., Ouimet, A. J., & Visentin, M. (2014). A new Italian questionnaire to assess caregivers of cancer patients’ satisfaction with palliative care: Multicenter validation of the post mortem questionnaire-short form. Journal of Pain and Symptom Management, 47(2), 298–306. https://doi.org/10.1016/j.jpainsymman.2013.03.018
Petersen, A., Munsie, M., Tanner, C., MacGregor, C., Brophy, J., Wathen, N., Harris, R., Wyatt, S., Pasveer, B., Synnes, O., & Moser, I. (2020). Section 3: Locus of Care. In Health, Technology and Society (pp. 135–180). https://doi.org/10.1007/978-981-15-4354-8_4
Pettus, K. I. (2017). Leave no one (suffering) behind: Palliative Care and the SDGs. Ehospice: Palliative Care News, Views and Inspiration around the World. https://ehospice.com/international_posts/leave-no-one-suffering-behind-palliative-care-and-the-sdgs/
Price, A., Hotopf, M., Higginson, I. J., Monroe, B., & Henderson, M. (2006). Psychological Services in Hospices in the UK and Republic of Ireland. Journal of the Royal Society of Medicine, 99(12), 637–639. https://doi.org/10.1177/014107680609901213
Russell, D., Diamond, E. L., Lauder, B., Dignam, R. R., Dowding, D. W., Peng, T. R., Prigerson, H. G., & Bowles, K. H. (2017). Frequency and Risk Factors for Live Discharge from Hospice. Journal of the American Geriatrics Society, 65(8), 1726–1732. https://doi.org/10.1111/jgs.14859
Scott, E. (2022). The benefits of Meditation for Stress Management. https://www.verywellmind.com/meditation-4157199
Shohani, M., Badfar, G., Nasirkandy, M. P., Kaikhavani, S., Rahmati, S., Modmeli, Y., Soleymani, A., & Azami, M. (2018). The Effect of Yoga on Stress, Anxiety, and Depression in Women. International Journal of Preventive Medicine, 9, 21. https://doi.org/10.4103/ijpvm.IJPVM_242_16
Smith, G. (2014). Evidence-Based design practices for the palliative care environment. https://www.bdcnetwork.com/blog/evidence-based-design-practices-palliative-care-environment
Verderber, S., & Refuerzo, B. (2019). Innovations in Hospice Architecture. https://doi.org/10.4324/9780429316104
Visvizi, A., Abdel-Razek, S. A., Wosiek, R., & Malik, R. (2021). Conceptualizing Walking and Walkability in the Smart City through a Model Composite w2 Smart City Utility Index. Energies, 14(23). https://doi.org/10.3390/en14238193
WHO, & WHPCA. (2020). Global Atlas of Palliative Care 2nd Edition (Issue 2). http://www.who.int/cancer/publications/palliative-care-atlas/en/
Woodyard, C. (2011). Exploring the therapeutic effects of yoga and its ability to increase quality of life. International Journal of Yoga, 4(2), 49. https://doi.org/10.4103/0973-6131.85485
World Health Organization. (2016). Global report on urban health: equitable, healthier cities for sustainable development. http://www.who.int/about/licensing/copy-right_form/index.html
Zadeh, R. S., Eshelman, P., Setla, J., Kennedy, L., Hon, E., & Basara, A. (2018). Environmental Design for End-of-Life Care: An Integrative Review on Improving the Quality of Life and Managing Symptoms for Patients in Institutional Settings. Journal of Pain and Symptom Management, 55(3), 1018–1034. https://doi.org/10.1016/j.jpainsymman.2017.09.011
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