The world's population is aging. The World Health Organization estimates that by 2050, the proportion of people 60 years or older in the world will have doubled, from 11% in 2000 to 22% (2 billion people) in 2050. This makes services for the elderly, like hospice care, which seeks to ease the pain (physical and emotional) of terminally ill patients and their families in their last days, even more important.
The problem is, we tend to avoid talking about death and dying, and people don't always make plans in advance for end-of-life care. And as it stands, today's hospice care system can be can be impersonal, under-resourced and under-staffed, and plagued with communication issues between care workers, patients, and families. In some cases, the people who provide palliative care are also paid criminally low wages. In the U.S., home hospice care work only recently stopped being classified as "companionship," meaning workers didn't qualify for federal labor protections.
Singapore- and Barcelona-based health care design consultancy fuelfor spent nine months researching hospice care and its issues in Singapore, where the designers found hospice to be an "invisible and avoided service." Commissioned by the Lien Foundation, a Singapore-based philanthropy, and the Ang Chin Moh Foundation, a funeral service foundation,* fuelfor came up with a handful of strategies to improve the way hospice care is run, both in Singapore and in the rest of the world.
The Hospitable Hospice handbook (which won a 2014 International Design Excellence Award) redesigns not only the look and function of hospice care facilities, but also how hospice workers communicate with each other, how people learn about and experience the hospice process, and how people pay for care. Here are seven of their suggestions for better care:
This community-based service is designed to help raise awareness of hospice care in the facility's surrounding neighborhood, improving public perception of end-of-life care. The Open Hospice features community amenities like a shared garden with a kindergarten, a food delivery service, a bus service, a spa, and a movie theater. Open to the public, it's intended to give people of all ages, healthy or not, a reason to engage with the hospice facility.
This hospice building is organized based on privacy and the level of medical support offered. The upper floors of the building are more private, with bedrooms and dining for patients, while the lower floors offer green space and tables for the public as well as those in hospice care. Each floor has places to socialize, and places for solitary relaxation. One side of the building is reserved for clinical services.
Compass is a service intended to be provided by the government to help people navigate end-of-life-care. The designers found that too many people don't plan for end-of-life care, making it a stressful and rushed process for both patients and their families. A boxed kit of instructional pamphlets and informational cards, as well as an app, would educate people about end-of-life care and help guide them through the process.
The designers propose a credit system, called Softcare, associated with Singapore's Medisave medical savings account program, which would get people thinking about and involved in hospice at a younger age. People could earn credits by volunteering at a hospice facility or driving hospice patients to appointments. Those credits could be spent on health-related purchases throughout the person's life, or used for their own hospice care fund.
This app is a platform designed for palliative care professionals to exchange info, share best practices, and ask questions. The app is intended to increase communication across disciplines and locations. Hospice is a holistic practice that involves a lot of different people—including the patient's various doctors, nurses, pharmacists, social workers. Keeping an open channel of communication through an app would allow all those stakeholders to keep up-to-date on the patient's status and make decisions about their care.
The whole point of palliative care is to help people enjoy the remaining moments of their lives. What better way to do that than with cookies? The hospice service program is designed to give patients relief from the stress and pain they're experiencing, with activities like baking cookies and taking volunteer-led field trips with loved ones.
This would be a customized care service tailored to individuals and their families. Decorated care rooms help people express their identity. Tools like "Do Not Disturb"-style door cards help patients indicate their preferences about the environment.
Most of the designs the guide advocates seem a little pie-in-the-sky, a fact that the designers readily acknowledge. Achieving these goals would require overcoming many hurdles, including getting the hospice care community to partner with other health care providers and community organizations outside the health field, and making better end-of-life care part of public policy. "Given such challenges, it would be too easy to dismiss this ideal vision," the designers write in the handbook, but they argue that it's important to consider at least some of the ideas. "Even taking small steps can eventually lead to bigger change." It would be a bureaucratic nightmare to implement such utopian visions as the open hospice neighborhood or the Softcare system, but something like PalliApp might be a more achievable goal to solve a significant issue in palliative care.
*Clarification: The original version of this article mistakenly referred to the Ang Chin Moh Foundation by its abbreviated name, the ACM Foundation. In addition, it is a funeral service foundation, not a funeral service company. We regret the error.
[All Images: Courtesy Fuelfor]