Navigating Death: Service Design for End-of-Life Care Facilities

“By 2030, 1 in 6 people in the world will be aged 60 years or older.” (WHO)

With increase in age, people biologically decrease in physical and mental capacity, and are more vulnerable to disease and, eventually, death.  In the coming decades there will be an exponential increase in the elderly population, and as well as a rise in chronic illness– “Of the population 50 years and older, the number with at least one chronic disease is estimated to increase by 99.5% from 71.522 million in 2020 to 142.66 million by 2050” (National Library of Medicine).

Today, dying people are cared for through palliative care, particularly hospices. Palliative care is a philosophy as well as application of care that deals with providing a comfortable, painless end-of-life. Hospice is a type of palliative care for terminally ill patients whose life expectancy is between three to six months. Hospice aims to “provide compassionate, comprehensive, person-centered care to terminal patients and their families at home or in a homelike setting” (Hospitable Hospice).

Currently though, these resources are inadequate and address death in unproductive, even harmful, ways. Older people contribute greatly to society and personal family structures, and above all, deserve to live full, fulfilling lives. Unfortunately though, when many elderly folks’ lives begin to come to a close, the society that they likely uplifted their entire lives through work and participation seems to turn its cheek. Every year, these people pass away, often with little institutional or community support, and their loved ones navigate grief lacking similar resources.

A study conducted in Singapore on ways to improve end-life-care called “Hospitable Hospice: Redesigning Care for Tomorrow”  identified existing issues with hospice care:

• “Hospices are isolated from society
• Hospice spaces are not designed to support palliative care practices
• Patients need support to have their voices heard
• Decision-making is highly stressful for patients and families
• Palliative care teams need to be cared for” (eHospice)

Lee Poh Wah, the CEO of the philanthropy organization Lien Foundation who helped facilitate the study says: “Today’s Hospices were built for yesterday” (eHospice). Hospices are isolated from society, don’t support consistent palliative care, patients aren’t listened to or supported, it does not adequately support loved ones, and hospice workers are exploited and not fairly compensated.

In the aforementioned study, done by healthcare design consultancy Fuelfore, they developed 24 design principles and seven universal concepts to improve hospice care. The 24 design principles include better adapting spaces to users, intimate, human-scale service, designing with family in mind, and keeping the normalities while focusing on the little pleasures of life.

I will discuss how these principles are present and included in two of the seven concepts the study proposes: “Care Central” and “The Open Hospice,” and how service design is an imperative consideration in organizing hospice care.

Care Central is a proposed model for the layout and organization of a hospice building.  It proposes integrating a hospice center as an integral part of a community, and increasing volunteering and gathering opportunities in the facility. It suggests a layout that transitions on different axes from more to less clinical, private to public, and from social to solitary.

This accommodates all different types of environments a patient, family member, or staff may want to be in based on their condition and state of mind. Having a hospice at a place where community members are already familiar with will make the process smoother and more comfortable, and introduces earlier touchpoints to the care ecosystem. By bringing in volunteers and children, it satisfies the design principles of making socialization easy, opening services to a wider public, and not separating the healthy and the sick. By designing a wide range of spaces, it adapts spaces to the users, supports effortless withdrawal to privacy, and empowers patients with a sense of control.

The multisensory design aspect of children’s laughter stands out as an intelligent and beautiful way of providing both childcare and uplifting sensorial experiences for patients. The mobile medication dispensing carts put patients’ comfort first, and allow them to build routines aside from health-related rituals. The study found that boredom is a large issue at many hospices; Care Central addresses this by emphasizing that though patients may be dying, they still ought to live life. They should not be stripped of their autonomy, kept inside all day, deprived of their previous hobbies, or secluded from the public.

The Open Hospice further integrates the extended community into the care of the elderly and terminally ill by expanding care to and from those who are outside the hospice’s immediate contact.

This includes an awareness campaign, a bus that takes elderly patients and community members on trips, a meal delivery service that doubles as a check-in with elderly neighbors, as well as facilitating connections between children and the elderly. This aspect in particular continues to take advantage of the symbiotic relationship between young and old people. The integration of different human-centered services to benefit each other is an often overlooked method in service design, especially in less community-centered countries. Designers should ask themselves: how can different services uplift each other? This results in overall beneficial proposals like Care Central and The Open Hospice.  

With the population of elderly people exponentially growing, we have limited time to adopt better, more accommodating hospice care systems. By looking at this issue from a service design lens, we can improve the experience of dying for people across the world, and provide support at the time in one’s life when they and their loved ones need it most.