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Earl

Earl

Cancer diagnosis and treatment pathway with family care partners

ⓘ Contribute to this guide by helping translate the following patient journey into FHIR resources and refining the patient example! This narrative is a work in progress, and we have added Diego Carrillo as a temporary place holder to a cancer patient. The .phr file needs updating to correspond to the following narrative. Pull requests encouraged.

Narrative History

Earl is a 79-year-old Black Hispanic man who was self-employed as a gardener until he retired about 10 years ago. He speaks both Spanish and English, but is more comfortable with Spanish and often has trouble with medical terminology in English. He recently received a stage III rectal cancer diagnosis and is beginning treatment with radiation and chemotherapy, followed by surgery. His wife and daughter are his primary care partners and play active roles within the care team, although they both work full-time jobs. The patient lives in a family home with his daughter and wife, so he is often home alone and must care for himself and avoid emergency situations. The daughter works as a clinical research coordinator and is currently transitioning from full-time work-from-home back into the office part-time, so the family is interested in implementing more low-tech remote monitoring technology. The family’s goals are to coordinate care and treatment, ensure safety at home, and respond to shifting health needs and crises.

The patient was in his usual state of health until about a year ago, when he began having pain and discomfort with bending, sitting, and during bowel movements. His provider instructed him on diet, but his condition continued to deteriorate. When he began having rectal bleeding, he received a misdiagnosis of diverticulitis and began another treatment that did not resolve his symptoms. The patient went to the emergency department (ED) after a bout of rectal bleeding would not stop for several hours. They admitted him to the hospital where he was diagnosed with rectal cancer (stage III). He remained in inpatient care for several days to stabilize his condition and for further scans and testing. This diagnosis was unsurprising, given that the patient’s father died of rectal cancer around age 60; but the family history did not trigger testing for rectal cancer, which could have shortened the time to diagnosis. The patient, together with his wife and daughter, began seeing a care team at a cancer institute at a nearby university hospital. After about two weeks of imaging and clinical consultations, the family was presented with the available options and the recommendation from the doctor. Together with this guidance, they decided on a treatment plan, which the doctors have said is “with curative intent”. The patient underwent surgery to create a colostomy and place a port-a-cath for use in chemotherapy. The week before treatment was scheduled to begin, Earl’s condition deteriorated slightly and resulted in a fall, which delayed treatment for another week. He needed IV medications to correct for high calcium in his blood, which caused his cognitive and motor symptoms. Due to low platelet count and bleeding from his fall, he also required blood product transfusions to support healing. This incident scared the family and could have been prevented. He is currently undergoing chemoradiation to shrink the tumor before it can be surgically removed. After surgery, depending on the pathology of the remaining tumor tissue, the doctors will consider up to 6 months of adjuvant oral chemotherapy. He wants to remain independent and safe in his home environment, particularly when alone.

Earl and his family use PCD to compile useful information from different family members and to coordinate care. They use mostly low-tech methods and information is mainly compiled in a family chat group. The patient and family track more or less depending on their needs and what is useful for a particular purpose. Their goals are not to use data for long-term purposes, but to facilitate care, safety, and treatment. Full detail into the PCD used and shared with providers can be found in Table 7. A summary of PCD collected and used by the family and care team is below.