Can we use design approaches to increase comfort and reduce suffering at the end-of-life? A focused literature review
TimeFriday, April 1611:20am - 11:40am EDT
LocationPatient Safety Research and Initiatives
DescriptionWe will present a literature review we conducted in 2019-2020 on the concept of end-of-life (EoL). Specifically, we focused on what researchers suggest may improve this experience and reduce suffering, and the potential role of design in the EoL experience. We will discuss the key themes that are present in and important to an EoL experience, the stakeholders in the situation, designs that have been explored or developed to help improve EoL experiences, and existing problem areas that have yet to be addressed (or were not at the time of research, between October 2019 - May 2020). In addition, the presentation will discuss the EoL experience within the context of the pandemic caused by the SARS-CoV-2 virus. In this summary we have included only some references from our review, but the presentation and full paper would include our full reference list (~40 papers).
End-of-life care is care for an individual with a terminal illness who only has a short time left to live. This falls under palliative care, which is caring for an individual without treating them, but rather with compassion (Richardson, 2020). Palliative care is an approach that focuses on improving the quality of life for a person with life-threatening or life-limiting illness and their families in accordance with the person’s values and preferences. It is the prevention and relief of suffering through early identification, assessment and treatment of pain or other distressing symptoms, including social, psychological and emotional support. End-of-life care occurs in the last part of a person’s life, usually in the last days, weeks or months of life. Palliative care and end-of-life care are not interchangeable: palliative care includes end-of-life care, but palliative care is so much more than end-of-life care.
The end-of-life experience is felt by everyone, impacting the individual who is dying, but also their close family and friends, caregivers, and health professionals (Sonneveld a, 2019; Sonneveld b, 2019). End-of-life is different from other seminal life experiences since it forces us to contemplate our mortality and beliefs. Discussion of mortality and death can frighten many, making them a ‘taboo’, which can prevent individuals from preparing for the experience (Fisher, Craig, & Chamberlain, 2019; Utami, Bickore, Nikolopoulou, & Paasche-Orlow, 2017). While an end-of-life experience can be an extremely difficult process for all involved, researchers have identified opportunities for improvement and have shown it is possible to have “good death”.
Design for EoL has been more discussed in recent years, though still neglected in the literature, and with many issues yet to be addressed. This may include the design of medical care infrastructure, principles, processes, and more tangible elements of the system such as architecture (Sonneveld b, 2019; Simon, Gomes, Koeskeroglu, Higginson, & Bausewein, 2012).
A review was performed in 2019 of literature that discusses design for EoL. A total of 28 articles were reviewed, most of which directly discussed design for an aspect of EoL care or issues that are present and should be examined by or through design. In addition to the review, we participated in a ‘Communications at the End of Life’ workshop for Long Term Care workers supported by the Ontario Centres for Learning Research and Innovation in Long Term Care. What we learned in this workshop has been included alongside the findings from the literature review.
A second literature review consisting of 13 articles was conducted in 2020 of literature that discussed emerging issues in end-of-life care due to the COVID-19 pandemic conditions. The findings of this review in relation to EoL experience themes will be presented at the HFES conference.
Key themes we found to be important to EoL experience include Quality of Life (QoL) (Sonneveld a, 2019; Steinhauer et al, 2004; Zadeh et al., 2018), comfort (Fisher, Craig, & Chamberlain, 2019; Davies et al., 2016; Thienprayoon, Lane, & Grossoehme, 2019), control and independence (Sonneveld b, 2019; Richardson, 2020), communication and understanding (Meath, 2006; Sas et al., 2016), and relationships (Richardson, 2020; Utami, Bickore, Mikilopoulou, & Paasche-Orlow, 2017). Though QoL encompasses the other themes, they are in and of themselves important aspects of EoL, and therefore need to be considered when designing for and improving an EoL experience. The quality of how each theme is provided for in an end-of-life context can influence the positivity or negativity of the experience. Further, the literature showed that current care approaches and programs primarily consider the quality of life, comfort, and control and independency of the person who is dying; however, these factors should be considered for all primary stakeholders – the dying individual, their close friends and family, their primary caregiver and other caregivers, and their healthcare professionals who are involved in the experience of death and dying.
Some designs that have been developed to improve EoL experience include the Life Café, which targets death literacy and was created to address taboos around death (Fisher, Craig, & Chamberlain, 2019); a virtual spiritual guide, which aims to improve accessibility to discussions about religious or spiritual beliefs surrounding death (Utami, Bickore, Nikolopoulou, & Paasche-Orlow, 2017); Advanced Care Planning tools focused on improving interfaces and engagement for planning (Sonneveld b, 2019; Yamamoto et al., 2015); decision-making supports for healthcare staff regarding the type of care to provide (Davies et al., 2016; Febretti et al., 2014); and healing gardens which have been shown to improve QoL (Belcakova, Galbava, & Majorosova, 2018). Some areas that need to be better addressed include support for families and healthcare workers (Sonneveld b, 2019); death literacy and advance care planning (Yamamoto et al., 2015; Febretti et al., 2014); the design of hospitals as places of death (Reyniers et al., 2014; Beckstrand et al., 2018); the design of homes as places of death (Simon, Gomes, Koeskeroglu, Higginson, & Bausewein, 2012; Exley & Allen, 2007); environmental elements to support EoL (Zadeh et al., 2018; Belcakova, Galbava, & Majorosova, 2018); and cultural differences and communication in death and dying (Richardson, 2020; de Graaff, Francke, van den Muijsenbergh, & van der Geest, 2012).
The COVID-19 pandemic surfaced new issues in the EoL experience. From our review, the main impacts of the pandemic on the EoL experience include: strained finances to support EoL (Wallace et al., 2020); lack of social interaction (Lapid et al., 2020; Moore et al., 2020); reduced care and difficulties in resource management leading to ethical debates in prioritizing medical supplies and vaccines (Davies & Hayes, 2020; Lapid et al., 2020; Fusi-Schmidhauser et al., 2020; Goodnough, 2020); difficulties with communication (Morris, Moment, & de Lima Thomas, 2020); and the negative impact on the mental health of all stakeholders involved (Wallace et al, 2020; Lovel et al, 2020).
Discussion & Conclusion
At present, there are very few projects or changes within the field of design that have focused on improving the end-of-life experience in healthcare. Largely it seems to be due to the difficulty of approaching the topic. A stronger commitment to explore this area from the design community could have a significant and positive impact on people going through the experience of dying and those who are caring for them. Even small changes can have an impact. A few examples from the literature include improving aesthetics in palliative care rooms, increasing accessibility to counselling for the dying individual as well as the other primary stakeholders, and improving communication between healthcare professionals and other primary stakeholders.