(This article, used with permission, first appeared on the KevinMD website in April 2022. The author is Final Exit Network’s Surrogate Consultant and is a patient advocate and founder of Ending Well! Patient Advocacy. She focuses on end-of-life care and planning, aiming to help people have a “good death.” She can be reached at Final Exit Network and LinkedIn.)
“Death would not be called bad, O people, if one knew how to truly die.”
— Nanak
Her funeral was yesterday, and there was a huge turn-out. She was 67 and never cussed or said a bad word about anyone. She was much-friended and well-loved. In late January 2022, she was diagnosed with stage-4 cancer in her lungs, which metastasized to her liver and bones. At first, some medico used the word “terminal” and talked about “comfort care.” After all, cancer in three locations is news everyone dreads, and she was already having severe breathing issues from pneumonia. While in the hospital, they did an MRI and CT scan, and the family was told they had to wait for the results, so they waited, but they all knew how bad it was. She said she just wanted to go to the beach one last time and hug her four grandkids, all under age six; one born ten days before her diagnosis.
Instead of meeting with the palliative care team, who most likely would have recommended hospice, oncology took the lead.
She and her family met with her oncologist a week or so later. Instead of meeting with the palliative care team, who most likely would have recommended hospice, oncology took the lead. As is often the case, different doctors look at symptom management differently. The palliative care team supports the patient’s body, mind, and spirit, optimizing the quality of life for patient and family while reducing suffering in the final months or days. The oncologists focus on the disease and how to treat it. To them, failure is not an option.
They are holding out false hope while fighting against precious time.
Her oncologist “talked her into” taking the latest immunotherapy treatment, not a cure, but something to make him feel like they were doing something in an effort not to fail. This is not the first time I have heard this; it happens more often than not in my end-of-life work. Once she started the treatment in mid-February, he assured her and the family she’d feel better, and her appetite would return once the drugs kicked in, maybe “6-8 weeks.” They held out false hope while fighting against precious time. The treatment made her feel worse and delayed her going into hospice.
I could see how this was going to play out but could do nothing to stop it. I sent articles on comfort care, palliation info, and hospice benefits, but it was her decision to try to treat. Her two daughters, who adored their mother, told me individually that they thought she should have been on hospice from the start. One confided, “How do you tell your mother she should be on hospice?” Instead of making the most of the time she had left, which is the promise of hospice, she told them she didn’t want to “disappoint” her oncologist by “giving up.”
The tumors were winning and taking over her lungs.
She went into the hospital ER again for a severe breathing problem brought on by another pneumonia. This hospitalization was the final time. The generalist in a small rural hospital couldn’t believe she wasn’t already in hospice. He said her death was “imminent.” The tumors were winning and taking over her lungs. Even without tests, he could see how she was struggling and suffering. She went into hospice that afternoon. The hospice nurses, as usual, called it right; she had just a day or two left. The tumors finally won.
Many oncologists promise the moon and give people false hope, essentially lying because their discipline sees death as failure and not a natural part of life. Her daughters told me they wished the oncology doctor had told their mom and family the truth and not “lied about some miracle therapy.” Dr. Atul Gawande, in his seminal work, Being Mortal, is seen talking to the widower of his cancer patient, Sarah, a new mother who died from lung cancer. She spent her final week enduring brain radiation and was scheduled for more experimental therapy. Dr. Gawande told the husband he regretted telling them an experimental lung cancer treatment might also cure her thyroid cancer. He says the reason he regrets it is “because I knew it was a complete lie. I just wanted to have something positive to say.” The husband said he regrets chasing one useless therapy after another, always hoping for that elusive cure but, in doing so, sacrificing any quality time they might have had.
She died in the hospital with her family around her, but everyone had a bad death.
In their hearts, her daughters just wanted their mother to make the most of the time she had left. She never made it to the beach or hugged her grandchildren. From diagnosis to death, it was two short months. During those weeks, she waited for test results, went back and forth to the hospital to drain her lungs, and was on infusions for a useless Hail Mary treatment, all of which robbed her and her family of precious time to talk about what mattered most. She died in the hospital with her family around her, but everyone had a bad death.
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The National Library of Medicine advises that ” Acceptance of the concept of medical futility facilitates a paradigm shift from curative to palliative medicine, accommodating a more humane approach and avoiding unnecessary suffering in the course of the dying process. This should not be looked upon as abandoning the patient but rather as providing the patient and family with an opportunity to come to terms with the dying process.” I feel that this case clearly shows the need for a paradigm shift.
So it sounds as if the woman and her family made the wrong decision to begin with, visiting with the oncology team rather than the palliative team, yet the article never addresses this. It talks instead about what oncologists are trained to do, and makes it seem as if they’re somehow responsible for the way this death turned out. It was the decision to go with the oncology team that was responsible, it seems to me.
This is a reply to James Allen. You are correct; it was the woman’s poor choice not to go into hospice until the night before her death. She had stage 4 cancer in both lungs that had metastasized to her liver and bones. Her family thought she should accept the terminal diagnosis and receive comfort care. Her two daughters were in the room when her oncologist said he could “get her through this.” He said this drug would get her back on her feet and eating again as it had with his other patients. He should have been honest with her and told her about the treatment’s side effects. The daughters claimed he did not discuss side effects and are angry that he lied about the treatment. He painted a rosy picture, offering her a longer life, but he knew better. He was a doctor she trusted and believed. Instead of pumping her full of futile drugs that made her sicker, he could have given her the gift of more quality time with her family rather than a few extra days living with the ravages of cancer, struggling to breathe. Yes, oncologists can hide behind their training and blame the victim for choosing them instead of palliative care; her mistake was believing a doctor she trusted to tell her the truth. An honest conversation about the road ahead would have made a difference in her decision-making. He was responsible for her suffering and bad death by his lack of honesty. Doctors in a similar situation often refuse the aggressive treatment he gave her; they opt for quality time. https://news.weill.cornell.edu/news/2016/01/study-physicians-choose-less-intensive-end-of-life-care-than-general-public