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What if people in the later stages of life had someone to help guide them through the maze of choices to meet their needs?

What if they had someone to help them understand how these choices could support the most basic of questions of what matters most?

People often feel uncertain and insecure about their future when dealing with the daily challenges of serious illness.

The later stages of life should be a time full of purpose and meaning, a time when individuals can make personal choices based on what matters most to them, and a time when they are recognized as a whole person, not just an illness. 

[MUSIC PLAYING] I'm a diabetic. I have congestive heart failure. And I have, now, kidney failure. I don't get up and down the stairs very well. Or it's laundry. I don't get that done very well. Or it's meals. I don't get that done very well. Something seems easier to do than others. Same is like, it's easy to come out here then to go in the kitchen to fix a meal. 

I come out about once a month and, generally, we have a chance to catch up on what's been going on. Just reviewing some of those advanced care planning. Looking at personalized aspects of how he prefers to receive and do treatment. We had a pharmacist come out once to talk about medications that he's taking and just understanding of what they're doing. And having conversation around what Mr. Dixon sees as important and working well. 

Wonder if you might be able to smell this. It's a beautiful smell. 

Oh yeah. 

Growing a vegetable to eat or a flower plant to look at gives me that joy. It's just a passion in me that I love gardening. I love farming. 


As treatment of chronic disease becomes more involved and lifespans increase, patients and their families can feel overwhelmed from multiple specialist visits and numerous medications to financial, spiritual, and emotional stress. Persons with serious illness in their families can fall through the cracks. 

LifeCourse is an innovative approach to supporting patients and families who are in their last few years of life. So folks who may have advanced heart failure. They may have advanced cancer or advanced dementia, COPD, Parkinson's. Any of a number of conditions. 

Health care does a really nice job of taking care of folks when they're in the hospital. And then we do a really good when folks get very near the end of life, but we don't do as well in between. What can be months, what can be years of time that a patient and family will face, struggle with, be overwhelmed by advanced serious illness and to, on some level, abandon folks during that long period. I think it's something that we can no longer do. 

How have things been going? 

Well. Pretty well. 

Pretty well? 

Pretty well. 


We use, in the LifeCourse model, a lay health care worker who has, likely, life experience supporting someone with really advanced serious illness, but isn't a trained clinician. We call them care guides. And their job really is to partner with them in navigating the system. In navigating the other systems that they may need to intersect with. So not just health care, but social service systems and some of the other social assets. 

I joined almost two years ago. And then we started meeting. And if I look back, it was monthly. We talk about both medical and non-medical concerns in my visits. 

She's kept in close touch with us and referred us to people that we needed to be referred to. She's been a real resource person for us. She listens to me. I talk and she listens. 

When patients talk about what matters most to them, what ends up showing up less than the majority of the time are their physical health needs. So beginning to understand that 70% of the time, it's about all of the other aspects of self. And so this has given us a way to ask about that, to be able to capture it in the record, and then to be able to, with patients and families, develop that plan. 

What you've helped me do is write a story that's now in your medical chart that includes those details that haven't been there in the past. 

What we really are trying to do with care guide partnering with an individual and their friends and family members is to engage in an empowerment model, to be clear about what matters most, and then to really enable them to engage their primary care team members, their specialty care team members, but, more importantly, all of those supports that exist outside of a health care system that they're going to need in those last several years. 

I came to grips with my mortality a year ago February. 

There's a continuity in relationship that's seems to be really important to our patients. I'm still there, even when they've transitioned into another level of care. 

By coming to grips with death, I found peace. And that's available to anyone. 

I think it's taught me a lot about how to approach a serious illness with hope. 

The last project Bob completed is a book chronicling the last several years of his life and his thoughts on death called, How to Live Well and Finish Right. It includes a dedication to Judith Blomberg, his LifeCourse care guide. 

Late Life is a production of Twin Cities public television in partnership with Allina Health whose LifeCourse project, funded by The Robina Foundation, granted the producers unique access to their ongoing research into late life care in Minnesota.

What is LifeCourse?

Even though health care systems do well in providing intensive care during crises and in delivering hospice care at end of life, individuals living with serious illness face challenges during the "in-between" times. LifeCourse, a late life supportive care approach for people living with serious illness, aims to fill this gap.

Trained health care professionals called care guides visit patients in their home every month. They provide assistance in connecting to needed resources and navigating the health care system to help individuals get valuable information and care.

By helping individuals identify and access providers and services, LifeCourse supports what matters most to them.

LifeCourse key components:

  • Includes a trained health care professional, called a LifeCourse care guide, who acts as a key communicator across people, settings and organizations
  • Promotes whole person care by asking questions and connecting to support their medical and nonmedical concerns
  • Uses a family-oriented approach to help identify the strengths and needs of the person, and their key friends and family
  • Helps the person communicate what matters most to them and supports care that aligns with their expressed preferences

Better care. Better outcomes.

Research shows that LifeCourse patients are better able to maintain quality of life and have better care experiences than patients receiving usual care.

LifeCourse patients also use palliative and hospice care more often than patients receiving usual care.

What matters most

What matters most is different for every person and every family. The later stages of life — even with a serious illness — should be filled with purpose, meaning and joy.

Some want to better understand their health care options and have a say. Others wish to honor cultural or religious practices. Some simply want to attend a reunion or family event.

When people can talk openly about what matters most to them, health care providers, family, and close friends can better support them as they navigate the challenges of late life.

Transformative change

Allina Health is expanding LifeCourse through operational funding to primary care and specialty clinics.

Allina Health is grateful to the Robina Foundation for making this work possible. The Robina Foundation is dedicated to encouraging innovation and supporting transformative change in organizations and communities.

Its benefactor, James Binger, former president of Honeywell, was a grateful patient at Abbott Northwestern Hospital and a lifelong supporter of positive social change in our community and our country. It is a privilege to honor his legacy through this important work.