Could people with a serious illness live well?
Four stories that show us what future of palliative care could look like, and what we need to do now.
A national project from the University of Washington Cambia Palliative Care Center of Excellence, The John A. Hartford Foundation.
What we need now is more than a good death.
Thanks to advances in research, models of care, and innovation, people with serious illness are living better than ever before. It’s possible for people with a serious illness to live well in the face of serious illness.
But we are far from assuring that every person living with a serious illness has access to that kind of care, that is based on their values, proactively responds to their needs, and empowers their families.
Improving experience for patients & families means everyone has a role to play.
To ensure that everyone with a serious illness has access to the palliative care they need, we face a new set of challenges, that involves clinicians, health systems, communities, families & caregivers, and patients.
- Can we assure quality of services?
At every level, hospitals, clinics, home care, long term care, clinicians, aides
- Could payment mechanisms support care that is seamless?
From diagnosis to end of life
- Can social services be integrated?
Social silo, meet medical silo
- Can we scale what is working?
Balancing adaptation and fidelity
- Could we create public messaging that resonates?
Building engagement and understanding
Who are we?
A multi-stakeholder group of clinicians, patients, families, policymakers, researchers, payers, foundations, and others dedicated to shaping a better future for the seriously ill, joined together to envision the future and find next-gen solutions. We were hosted by Care.Lab, a project funded by the John A. Hartford Foundation, and led by Anthony Back, MD.
What you see here is a product of our visioning--a process called transformative scenario planning. By using our collective experience and understanding to create scenarios--stories of patients you’ll recognize--we sought to crystallize the challenges as well as our vision of what better care for serious illness could look like. Our hope is that these stories will provoke and inspire you, and that you will use them in your own work as a changemaker--whether you’re a patient, family, nurse, policymaker, administrator, doctor, or researcher.
Four stories that could be the future
Judy, Earl, Ron, and Carmen are all based on real stories. Their stories show what care could look like in the future—and what we all need to do to create the care we want and know is possible.
JudyCould we ensure that patients can always choose care that matches their values?Judy's Story
EarlCould we ensure that families don’t have to piece together the care they need?Earl's Story
RonCould guidelines based on the best evidence reassure patients, instead of making them feel ignored?Ron's Story
CarmenIt’s possible for people to live well in the face of serious illness–from diagnosis to cure, and even at the last phase of life.Carmen's Story
A new manifesto for serious illness care
It’s possible for people to live well, even in the face of serious illness.
From diagnosis, through treatment, to cure or end of life.
Thanks to advances in medicine, technology and innovation, people with serious illness are living better than ever before.
Everyone has a role to play.
Improving the health care experience depends on clinicians, health systems, communities, social services, policies, payment, and oversight.
The big win would be cross-institution collaboration that creates an ecosystem of care.
We could all benefit.
Improving the experience for people living with serious illness is not just a good thing to do; it yields practical benefits and efficiencies for everyone.
Let’s work together to improve the experience of patients living with serious illness and their families.
Instead of a conveyor belt, an ecosystem of care
Too often, care for serious illness can feel like a series of procedures that are happening with little choice or guidance. In an ecosystem of care, all the kinds of care a person with serious illness needs would work together, in an interconnected, proactive, seamless way.
Could we work together to improve access to care, raise quality standards, ensure clinicians are trained, coordinate care between institutions, and develop payment mechanisms that support everyone to do the right thing? Could we improve patient and family experience even as we control costs?
Let’s work together to improve the experience for people with serious illness.
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