Why terminal cancer patients are cut off from hospice care

Nothing could put Patti Talacatino’s mind at ease. For 19 years, she had boarded planes bound for Christchurch, New Zealand, to attend her sister’s funeral. She knew the routine: Plane lands, baggage checks, plane…

Why terminal cancer patients are cut off from hospice care

Nothing could put Patti Talacatino’s mind at ease. For 19 years, she had boarded planes bound for Christchurch, New Zealand, to attend her sister’s funeral. She knew the routine: Plane lands, baggage checks, plane dinner, plane departure. Passengers form a snaking line of airline employees hurrying to check in, go through security, get a boarding pass. Usually, the line stretches beyond the boarding gate, and the airline will offer a queuing service in case another passenger needs to exit.

But when she arrived at Auckland airport this year, the line was much shorter. Dr. Talacatino’s brother had recently been diagnosed with pancreatic cancer, and his terminal cancer felt even more urgent than usual. After his funeral, Dr. Talacatino joined his family and stayed with them for a few weeks. And as she waited for her flight, she came to realize she was experiencing the repeated exclusion of terminal cancer patients from terminal-care options.

The policy meant that her brother could no longer go to a hospice center for hospice care and related services like religious counseling and bereavement support. He had two choices: stay at home and die alone or fly across the country to spend his last days in the comfort of his family. Neither option, Dr. Talacatino concluded, was possible because his pancreatic cancer was too advanced. But when she asked airline officials why he was not admitted to an inpatient hospice, they directed her to call the local cancer support group that had once helped her brother. They could not offer their help.

When her brother came to her for emotional and financial support, she told him that she feared that he would never see his children grow up. She was so close to leaving him that she had called him “family” on many occasions. As in all grief-stricken relationships, the more her brother feared loss, the less he could express affection. She was desperately worried that she had to accept an unbearable loss, no matter how far it was from death.

Dr. Talacatino recalled her visit to the doctor’s office when she learned her brother was dying. The staff seemed unfamiliar with the topic of hospice care and refused to enter the conversation. She told her brother he would be admitted as an inpatient hospice patient within days, if not hours.

“All he said is, ‘Let me know when you see me and I’ll do whatever it takes to get into a hospice,’” Dr. Talacatino said. “I said, ‘I’ll let you know. I’ll do what I can for you, but you need to say to us now that you need to get in.’ And he never did.”

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Over time, Dr. Talacatino began to discuss her situation with other terminal cancer patients, who had other complaints. One man was haunted by the death of his sister and, with her medications being removed, was in terrible pain. His doctor refused to arrange any special hospice care. Yet another woman was connected to the right hospital, but none of the staff was competent or available on-call to visit her during her last days. No one asked her at least if she needed hospice care.

Eventually, Dr. Talacatino and her family made the choice to create their own hospice program. Because the airline refused to admit the men and women who brought life to the airport, and because they wanted to provide support to the nurses and social workers who cared for the terminal patients, they hoped that a private hospice program might be even more effective. Through their own efforts, the hospice program she established has helped dozens of patients who had nowhere else to turn.

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