"He was able to speak and laugh and reminisce until he slipped into unconsciousness on his very last day and died peacefully, without medical intervention he never wanted."My husband, a physician and internist, felt a little “ping”; soon we had to tell our four children that their dad had metastatic pancreatic cancer, and promptly we had to do everything we could to make sure his wishes for the end of his young life would be honored. In many ways t became a battle to ensure the most fundamental of these wishes: that he be treated only to the extent that was reasonable, and that he come home to be with me and our children–that he not die in a hospital even though he required significant, 24-hour-a-day care.With a diagnosis of metastatic pancreatic cancer and a mean survival of six months, not a single one of dozens of health care professionals brought up hospice care with us. No one but my husband and I seemed to want to talk about his end-of-life care. Ultimately he picked up the phone in his hospital room and referred himself to hospice care, only to encounter a physician whose end-of-care “discussion” consisted of instructing my husband that he needed to sign a portable DNR as well because “If we have to resusitate you, it’s not going to be pretty.” With the unwavering support of friends, we were able to get my husband home only by going rogue on a hospice whose medical director was resistant to sending him home, and was suggesting yet more procedures he did not want and could not endure.
We took him home, where he was surrounded by us and friends and other family members, surrounded by our children’s artwork and pictures and music–and where, for the first time during his ordeal, he encountered no pain and no nausea and finally was in comfort. He was able to stand up and walk by himself, untethered, and for his very last trip outside leaned on our children and saw the biggest moon in nineteen years. He was able to speak and laugh and reminisce until he slipped into unconsciousness on his very last day and died peacefully, without medical intervention he never wanted.