I didn’t need a doctor to tell me that it was over. On the way to no longer being, a person suffering from a terminal disease, like cancer, ceases to be themselves. It is during this time, which is hopefully as brief as possible for all involved, that family or friends (or medical staff, if they are sufficiently human) will get the message and take immediate action. The objective, you quickly ascertain, is no longer to help the person get back to being the person they were, but to help expedite –or ease– the resolution that Nature is not always interested in accommodating.
From August 1997 through August 2002 my sister’s children were our family’s salvation. First the girl, six months old, all smiles, laughs (and dirty diapers) in the room where my mother recovered from that first surgery. We were all figuring out how to handle this (the situation, the operation, the prognosis, the rest of our lives) together, in real time which we found to be increasingly unreal. All the tension, distress and a sudden unfamiliarity with ourselves would have been unmanageable without a distraction. Thankfully, we had an adorable, utterly uncomplicated distraction, a gift that gave us all something to savor at a time when we may have otherwise had to fill every second with actions, words and especially thoughts.
Then came the boy, a little blonde baby born in the last week of May, easing us into the sweltering summer of 2000. A couple of weeks before the full schedule of hardcore chemotherapy commenced. How could we have made it through June and July (the heat, the hair loss, the sight of incorruptible staff pumping poison into my mother in order to make her better) without this ebullient newborn and his dedicated (and only slightly jealous) big sister? The pictures from that period are awkward metaphors: the pale and chemical-bloated grandmother holding two beacons of immortality in her lap, their existence injecting a purpose and animation the rest of us could not begin to approximate.
Every single day between March ’97 and the first week of August ’02, those two kids were the things my mother loved best in the world: more than any hobbies, more than memories, more than us, more than herself. We saw this; we understood it and we accepted it. During the more difficult times we embraced it, appreciating the forces of the universe for providing a source of vitality that money and medicine do not address.
In July we knew (the doctors told us, using their expertise to avoid telling us anything) and, having already wrestled with what and why, we turned out attention to how long. The next few weeks were not unlike portions of the previous five years in miniature: good days, okay days, bad days and awful days. But there had not been too many terrible days (most of those involved what each of us, in our own ways, experienced when we were alone, when we could finally afford to let our defenses down and enable our fears and suspicions to stalk us in the open, usually at night when the silence conspires against anyone who is hiding from something).
Eventually, and entirely too soon, based on what the doctors told us –even though they told us nothing– the worst days arrived; days worse than anything we ever could have conceived or prepared for (which might explain why the doctors don’t tell you anything).
Eventually, and not entirely too late, Hospice arrived. We told my mother about it and she endorsed our decision (What took you so long, she did not need to ask). That morning when the nurse arrived, a gentle saint sent from heaven (because, as you may see for yourself someday, some clichés are true –and you are grateful for them), it was the worst day. My mother, shaking and distracted, an innocent bystander as pain and fear reverberated inside, each struggling to assume full possession of her decimated body.
(My sister and I looking at each other, relieved that at least we had been together to get through the previous afternoon, the day our mother finally succumbed, the day the pressure and the dread –at long last– had become too overwhelming for her to bear, when she told us to make the suffering go away, when she begged the God who was not in that room to help relieve her agony, when she reverted back to being the child she could not remember ever having been, sobbing at the impunity with which this disease assaulted her, when she resignedly looked into our eyes, no longer a mother or a wife or a woman, now just a cornered animal in a cold alley, unable to see or understand what was tormenting her, and beseeched us with a desperation I hope never to hear in another person’s voice to make it stop, when she said please, make it stop and we said, earnestly and with as much honesty as we could convey: We will.)
Watching her that morning as her two grandchildren buzzed obliviously around the room. There was the moment, the exact second, that she became somebody else: first she frowned (she was still twitching, her system yet to respond to the new medicine she had yet to receive) and a look, first of impatience, then indifference; the way she waved her hand (Take them out of here, she did not need to say). She did not say that and she did not necessarily think that; she was incapable of thinking that. And this is when I knew it was over. This is when I understood that the end had begun, because this was no longer my mother sitting –distracted and shaking– before me; this was instead a woman who had entered the last stage of a long, drawn-out, devastating dance with the illness she had loathed and feared more than anything else her entire adult life. She was no longer herself and she was no longer entirely with us, she was in a different place, that place some of us are obliged to go when our bodies, then our brains are assailed, inhabited by some malignant host, and we heed a primal imperative to follow that path until we arrive at the place where we no longer need to walk or cry or breathe or believe.
* From a non-fiction work-in-progress entitled Please Talk About Me When I’m Gone.
**Subject: Response to Post article Nov. 2009
Date: Tue, 15 Feb 2011 11:15:10 -0500
Dear Dr. Marshall,
I know this isn’t the most timely response to your article but I have held onto it with the intention of getting to it and so here it is. My mother, Linda Murphy, was a patient of yours back in 2001-2002 enrolled in a clinical trial for colon cancer. Sadly she died from her disease in Aug. 2002. I would like to say thank you for the excellent care you gave her during her time with you-you were truly kind and compassionate and I was very happy that she found you.
I thought your article was very important and enlightening. The numbers you gave about the number of patients who die from gastrointestinal cancer was scary and illuminating. I was very glad that you raised the issues of doctors and the financial incentives they gain from extensive chemotherapy treatments. This may be a part of the problem I saw with my mother’s care. I understand that there is a fine line between giving someone hope and being honest about where they are in their disease. My frustation is that I saw no doctors who were willing to have an honest discussion of my mother’s prognosis and then when the time was appropriate to talk about end of life care. What I think doctors need to bear in mind is that patients and their families look to you for guidance. We want desperately to believe in a cure and that the declines we witness are just declines and not death. We are ignorant and in denial of the medical facts even when we seek to educate ourselves as I did. I always believed that when we got to the time of dying for my mother that doctors would help guide us with that process and help us transition to the next stage of Hospice. In fact we were quite abandoned. My mother was in a trial at Georgetown and no one ever said she might be looking at an outcome of 6 months vs. 5 months of extra life. This would have been hard to hear but I at least wanted the truth and never got the kind of cold facts I learned reading your article.
After my mother’s last surgery when they could no longer remove the cancer the doctors were still telling her that chemo was an option. Not one person at the hospital or at Georgetown ever mentioned Hospice as something to consider. As a result my mother was in crisis-needing fluids at Kaiser every day, not able to keep any food down, given a feeding tube and yet no medical person ever sat us down and said there is better care for your mom at this stage. My mom was still believing that she could get well enough to try more chemo. I had to ask more than one doctor how much time my mother had left and still no mention of end of life care. As a result of this my mom and dad were able to maintain their denial about how bad things were and finally my brother and I brought in Hospice.
My mother was not ignorant of medical facts but her emotional despair at facing death at 58 kept her in denial and I believe doctors could have helped by trying to talk more with her and her family about what the true options were for her at that stage. I don’t know what possible help chemo could have been for her at the end, actually I do-no possible help. But this carrot dangled out there for patients and families prolongs the agony. I don’t know if it is financial incentive or perhaps an understandable fear or denial in doctors that prevent more honest discussion but it is desperately needed. At the end my mother could not continue with the trial she was enrolled in at Georgetown, though I know she was proud to have been a part of it while she could. But afterwards she was esentially cut off from her support at Georgetown and sent back to the care of Kaiser who failed her miserably. I know you all are busy but I think helping trial participants with the transition to the next stage of care is crucial. Perhaps having a mental health component to caring for cancer patients with such high mortality rates is needed also. Cancer doctors need to remember that you deal with this everyday but for family members wehave entered a terrifying abyss that we have no idea how to navigate and that we still look to doctors to help us-and the use of chemo is just one small part of what we need.
I wish I could say that my mother’s case is the exception but as a mental health professional I have seen many other clients go through the kind of experience that my family did. Knowing what I know I can often hear when things sound very bleak and yet I have clients who talk about family members being offered ‘treatment’ with no understanding of what toll these treatments may have or what the possible positive outcome is supposed to be. Things will continue as they are until medical professionals can start being more honest and helping patients and their families gain a more realistic expectation about treatment outcomes and helping them focus on quality end of life care.
Thank you for reading this and for your important article and thank you again for the quality care you gave my mother while she was your patient.
Sincerely,
Janine Murphy-Neilson
**Letter from my sister to one of the many doctors who worked with my mother; it is her hope (and mine) that our family’s experience (the good as well as the not-so-good) might help raise some awareness and understanding, and possibly be of assistance to any other family who may someday find themselves faced with this most extraordinary ordeal. Dr. Marshall’s article from The Washington Post can be found here.
