It’s not a topic that most of us enjoy thinking or talking about. But it’s a reality I faced at the age of 13 and will face again in July—the 20th anniversary of my mother’s death. It’s something that we all must acknowledge at some point in our lives: None of us will be around forever.
A colleague of mine once put it very clearly to me: What many of us fear most is dying—not necessarily death. So, I wanted to explore how end of life (and the experience around it) might change if we achieve a future where we have longer life spans and longer health spans—the amount of time that one is healthy in life. This was the focus of some conversations we had during our latest research, “The future of aging: What might the expansion of health span have on society?”
Through this research, we spoke with 30 individuals in aging services, policy, innovation, and technology. We asked them how they think the future of health might impact the core aspects of life and living—longevity, community, well-being, and yes, end of life. In a future where life sciences and health care organizations are focused on putting consumers and data at the center of the model—and where widespread interoperability enables the industry to focus on supporting the health and well-being of consumers instead of treating disease—aging and the end of life could look radically different than it does today.
In our paper, we described Chase who, in 2040, is 40 years old and has been living with indolent non-Hodgkin lymphoma for five years. As part of his ongoing disease management, each time his condition worsens, he and his care manager sit down and look at projections of likely scenarios and what each scenario might mean for his lifestyle, level of independence, and life span. These conversations create an opportunity for Chase to make and document end-of-life decisions.
How might technology support end-of-life planning and preparation in the future of health?
If we are able to achieve a future where health and well-being are at the center of care, what might that mean for people like Chase?
Data could help people—with a doctor or care manager—prepare. People might sign up for virtual experiences to try out different death experiences. This could help not only with reducing the anxiety around end-of-life, but also allow people to visualize and document (for example, in advance directives) the decisions they want made at the end of their lives. These services could be informed by streams of data, which could allow clinicians to give consumers a glimpse into their future based on hard evidence. Moreover, in this future, palliative care skills and knowledge could become part of the standard of care rather than a specialty. Conversations about end-of-life wishes should happen early and often.
Costs might be less concentrated at the end of life in the future of health. If health care focused on fostering greater access to preventive care and used data and smart technologies to analyze it (like artificial intelligence) to inform treatment, costs might be spread out throughout the entire life span.
In Chase’s case, we might see that by age 60 his cancer has an accelerated progression at the end stage of the disease that is resistant to treatment. The end-of-life planning he and his family took part in years earlier means that Chase’s wishes related to hospice and palliative care are granted. At the same time, his daughter is automatically enrolled in grief counseling and group therapy sessions to help her prepare for the death of her father…and for life after he’s gone. The community around Chase and his daughter could help the two of them carry out his well-documented end-of-life wishes.
Are we seeing any evidence of a shift today?
Many people today are beginning to be more open to having conversations about end of life. In cities all over the world, people are gathering to drink tea, eat pastries…and talk about death. The Death Café concept began in the UK in 2011, but since then has expanded to thousands of locations around the county.1 Indeed, already today, one-quarter of the US population—and 40 percent of people age 75 and older—say they are not afraid of dying. Even more important, nearly all (nine in 10) people say they are open to having conversations around their end-of-life plans. What people often fear more than death is disability and suffering: dementia and pain are top of the list.2 Fabric, a life insurance startup that lets people create free wills online, is trying to reduce the stress and last-minute planning that can happen in these situations. The company says its user-friendly tools can make the process of creating legally binding documents quick and painless.3
Many health care professionals also feel unprepared or anxious about having end-of-life conversations with their patients.4 One company, Embodied Labs, is trying to help them feel better prepared. Through virtual reality simulations of a patient receiving a terminal diagnosis or starting palliative care, Embodied hopes to boost care professionals’ capacity to empathize and experience the end of life through the eyes of their patients. Another organization, the Center to Advance Palliative Care (CAPC), has made strides in increasing access to quality palliative care for people living with serious illness. In early 2019, CAPC launched its first Tipping Point Challenge to increase the number of palliative care specialists and to boost the number of specialties with palliative care skills training.5
We’re also starting to get a better understanding of spending at the end of life—at least some researchers are challenging the years-old notion that we spend too much on the last year of life. Using machine learning, the researchers looked at mortality predictions to understand spending at the end of life. They found two important things. For one, we spend a lot of money treating sick people—some of which die, some of which recover. That finding led them to a second revelation: death is still highly unpredictable today.6 In the future of health, where data is shared freely and frequently, we may start to understand even more about end-of-life care and spending.
Health care industry stakeholders can play a role in advancing preparation
Life sciences and health care companies can offer services and products to support better end-of-life preparation. One starting place is to explore perspectives of other market participants; another is to scan the environment for novel offerings. Long-term care insurers and financial services companies understand an entirely different scope of priorities that consumers hold. Organizations might also need to give people access to end-of-life planning as part of their benefits.
Health care professionals armed with more tools to have end-of-life conversations, like the ones used by Aspen Digital Life that help families identify where their loved ones placed their money and other important online information, could also help. Merrill Lynch, for example, partnered with Age Wave and created a Chief Gerontology Officer to help train its financial advisors on having end-of-life conversations.
Benjamin Franklin is credited with saying that “in this world, nothing can be certain except death and taxes.” While death is inevitable, in a very personal way, I have hope that in the future, we will be better prepared to deal with it.