Could guidelines based on the best evidence reassure patients, instead of making them feel ignored?
Ron’s story shows what happens too often now, but it doesn’t have to be this way.
For Ron, who had no insurance, getting treatment for prostate cancer was a struggle.
Ron, 53, was uninsured when he was diagnosed with Stage 4 prostate cancer. As a commercial fisherman, he knew he could pull his weight and make a decent living. He never imagined that that his back pain was cancer that started in his prostate and spread through his bones.
The urologist who did the biopsy had not arranged a follow up visit, because Ron didn’t have insurance. Instead, the urologist left a voice mail: Ron had cancer, and it was ‘very serious.’ Ron’s first thought was, “I’m a goner.” His father had died of lung cancer, after surgical removal of his right lung that left him disabled, and Ron remembered him crying with pain before his death.
But his cancer treatment didn’t include his worry, or food, or transportation to clinic.
The news shook Ron. He tried to go to work but couldn’t handle the pain. Finally, he went to a local emergency room. There, the ER doctor prescribed pain pills without looking him in the eye, and called a social worker, who got Ron the paperwork to get him enrolled in the state safety net insurance plan.
Ron’s initial cancer treatments were tougher than he expected. He couldn’t work, it took time to get disability, he didn’t have enough money to buy food, and he didn’t want to ask for help. Ron missed a few of his cancer treatments because he didn’t have transportation, and he ended up selling a few of his pain pills to buy food.
A promising new treatment, to Ron, was likely a cure. But this was far from reality.
A few months later, his cancer got worse, so his oncologist recommended another treatment. Ron was determined to keep going. But even the new treatment didn’t do much for his cancer. The oncologist suggested another new treatment he had seen presented at a conference, and he sounded optimistic, so Ron left the clinic feeling hopeful.
Shortly afterwards, Ron got a letter from the state health plan, stating that the new treatment was denied because it was not included in the latest guidelines. “This wasn’t my decision,” his oncologist said, “It’s your insurance.”
No one sat down to explain to Ron how serious his cancer was. No one explained that there were no treatments that were proven to help him live longer. No one helped Ron process this information, and then ask him what was important to him.
Ron left clinic bitter and angry. He spent the rest of his income on an unproven treatment.
What Ron concluded was that the medical decisions about whether he would live or die were being left to someone in an office who didn’t know him, and who was trying to save money by skimping on his treatment.
Ron told his girlfriend “I’m not ready to give up!” Online, he found many alternative medical treatments that advertised results that were nothing short of miraculous, and he decided to give up on the mainstream medical system. Ron felt bitter and mistrustful of ‘the system’ and spent the rest of his income and energy on unregulated treatments from an unlicensed provider.
No one ever told Ron that he was close to the end. He died on an ER gurney.
One day, Ron began to feel so much back and hip pain that he ended up going to an emergency room to ask for pain medication. The ER staff did blood tests, x-rays, and a CT scan, and told Ron that the cancer had spread throughout his bones and liver, and discharged him. Ron came back to the ER twice in the next 10 days to get more pain pills—since the ER only gave him 3 days’ worth at a time.
He ended up dying on a gurney in the ER, but not before a code blue was called and an unsuccessful attempt at CPR broke all his ribs, already fragile from cancer. He had told the ER staff that ‘he wanted everything.’ None of the ER staff had told Ron that they thought he had days to weeks left; the palliative care team was too understaffed to see Ron in the ER; none of the few hospice beds were available.
The doctors and nurses in the ER talked about his code for days—they felt terrible about it but felt powerless to do anything differently. The nurse manager referred to Ron’s case as one that had caused a great deal of ‘moral distress’ and told her administrators that this was contributing to staff turnover.
Ron’s story didn’t have to end this way.
Patients who have serious illness inevitably run up against the limitations of what medicine can do, and how long even the latest technology can prolong life. But when these limitations are handled in ways that patients can misinterpret as simple mechanisms to lower costs, patients can lose trust in providers, and wind up receiving expensive care that didn't match their values.
How could Ron’s story have ended differently?
If Ron’s oncologist had been skilled enough to start an early discussion about what Ron could expect, and what the new experimental treatment would really accomplish; if Ron had social services to help him trust his caregivers; if outpatient palliative care could have provided followup; if a psychosocial clinician had helped him cope more constructively; if the ER had access to palliative care expertise and someone to involve Ron’s sister before he died—then Ron would have been assisted in thinking through what his situation was and what his values really were, he could have made decisions out of thoughtfulness rather than anger. He might have had more of what he really needed—pain management, a comfortable bed, and his girlfriend at his side, in the last phase of his life.
Here’s how we could rewrite Ron’s story.
- Every patient with a serious illness could have access to clinicians with palliative care expertise starting early in their illness—from the time of diagnosis.
- Every clinic that deals with serious illness could bring medical services and social services to patients according to their need.
- Every emergency room could have on-the-spot palliative care expertise to enable patients to understand their situation and make choices based on values, so that tests and scans are used to match those values.
- Every clinician in a high acuity unit, like the ER, could provide care that didn’t create moral distress and predispose them to burnout.
Let’s work together to improve the experience for people with serious illness.
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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
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