It’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 describes what we’re capable of doing together.
After her stroke and a heart attack, Carmen and her husband worried about money.
At 68, Carmen thought she was healthy—until she had a hemorrhagic stroke and then a heart attack. Her husband, Eddie, a house painter, spent many nights worrying about how she could get the care she needed.
Fortunately, her community had a program that put together everything a patient with a serious illness would need—proactively. This community program drew together medical institutions and social services, to keep patients like Carmen at home starting long before they were eligible for hospice. Carmen was surprised to find that the program covered treatments to extend life and manage symptoms, as well as mental health, rehabilitation, social work, and support for the family.
Carmen daughter: “She could still live at home. My dad could concentrate on being her husband,”
Three times a week, a van picked Carmen up at home to take her to its downtown daycare center, where she could get her hair done, eat lunch, get physical therapy and podiatry services, then be taken by van to medical, dental and eye appointments. She went on day trips and to movies. At night, the van took her home with dinner for her husband to warm up, medications organized by date and time, and even diapers when she needed them. Nurses came to the house when she was sick. Attendants helped her bathe, and care managers kept her daughters updated.
In her final year, Carmen started to have heart failure and kidney problems. She had to stop being a greeter at her church and found herself getting weak even though she was taking all her meds. She told her nurse she wasn’t sure how much longer she had.
When Carmen took a turn for the worse, her husband knew where he could get help.
Shortly before Thanksgiving, Eddie woke up in the middle of the night because of an unfamiliar noise. It was Carmen, struggling to breathe. He called a nurse, who told him what to do that night. In the morning, another nurse came to see Carmen at home. The nurse spoke to a doctor on the phone, and Carmen was diagnosed with pneumonia and given antibiotics, and, oxygen and intravenous fluid.
Carmen rallied at first, but over the next 3 days, it became clear to a home care doctor that her right lung was full of fluid. He diagnosed that the pneumonia had caused fluid to build up between her lung and chest wall, and that it might be infected. He talked to Carmen about whether she wanted to go to the hospital to have the fluid drained—it would require a needle inserted into her chest, it would be uncomfortable, and it might not work—she might need to have a chest tube placed and maybe even need surgery.
Her medical team was honest and kind. Carmen was prepared: “comfort, family, faith.”
Carmen asked if, after all that, whether she would be able to go back to church—to walk in. When the doctor said she wasn’t sure, Carmen shook her head no. The home care nurse and doctor talked to Carmen and her family. The nurse said, “Remember when we talked a few months ago?” Carmen had told her care team that when her time came, she wanted to focus on comfort, family and faith. The nurse had documented that in the chart and shared a video for her family. Carmen agreed, “That is what I said, and I still feel that way. If this is my time, I want it to spend it here at home.”
Carmen received antibiotics for a few more days, but when it became clear that she was still getting worse, the doctor and nurse explained to Carmen and her family that it was time to shift gears. They changed her medicines to focus on her comfort, and she had time to receive her closest friends.
Carmen’s care team knew what she wanted, and they aligned her care with those values.
The home care aide read to her from his Spanish bible, and she died with her family around, in her own bed. The nurses, aides, doctors, and spiritual care staff on the home care team felt good about the work they did with Carmen and her family. Her passing was a big adjustment for Carmen’s husband, but as he said in a bereavement group that he attended a month later, he had learned from Carmen how to do it right.
Carmen’s story didn’t have to end this way.
Thanks to technological advances, people with serious illness can be offered the possibility of extending their lives with a good quality of life in ways that were never before possible. But when the technology doesn’t work the way everyone hopes, pivotal medical decisions need to be made. Those moments are when a patient’s values ought to shape their care.
Living with a serious illness can be this way for more people.
Carmen’s story shows what the experience of people who are living with a serious illness could be like if we worked together to improve access to care, raise the quality standards, ensure clinicians have needed training, coordinate care between institutions, and develop payment mechanisms that support everyone to do the right thing.
Collaboration between medical care and social services, accountability for quality, clinician training, and new payment mechanisms made it possible for Carmen to experience seamless care throughout her serious illness.
Carmen’s story is one of many possible stories showing how the experience living with serious illness could be better.
Different types of serious illnesses have different trajectories, and different patients need at different stages of a serious illness. A person living with dementia, for example, needs a set of services—medical, social, and caregiver—than what we’ve illustrated with Carmen. And a person living with cirrhosis and substance use, for example, would need yet a different set of services.
What would creating better experiences of living with serious illness require?
Patients like Carmen could be supported by an integrated ecosystem of care, that starts within existing health systems and reaches across to other medical institutions, and social services, that puts the patient’s values and goals at the center of care.
Here are some reasons Carmen’s care could be arranged around her values:
- Care at every site was based on national quality measures spanning the continuum of care, including payer-driven incentives for providers and systems to bridge silos.
- Local coalitions between health systems and service agencies worked together to proactively offer Carmen medical treatments and social services that worked towards her goals, guided by her values.
- Home and community-based programs worked to avoid needless admissions or multiple trips between ER, hospital, skilled nursing facilities, and home.
- Carmen, her family, and her clinicians discussed her wishes and preferences at multiple points during Carmen’s life and documented them so everyone—providers and family—knew her priorities.
We could make Carmen’s story possible for all of us.
Downloads, How to Help, etc.
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
Use these stories for own purposes (downloads, etc.).