Dying Is A Difficult Business

When I first met her, there wasn’t anything extraordinary about her appearance or her story. She came in, like many others that I see, seeking to have a screening colonoscopy. Her last examination was over ten years ago, and her family convinced her it was a good idea to have it done again. In this respect, they were completely correct. We are all going to die sometime, but at least in our country, people die of colon cancer (with only rare exception) if they choose to neglect the widely proven advice to have some kind of screening exam beginning at the age of forty-five.

She wasn’t having any symptoms: certainly, no bleeding, pain or unexpected weight loss. Other than mild hypertension, she had been healthy most of her life. After explaining the necessary cleansing required to perform the exam, along with the very small risk of potential complications, she came in as an outpatient and had her procedure. Technically, it wasn’t a difficult exam, and fortunately, other than for small hemorrhoids, no abnormalities were seen. All of her routine lab tests prior to the exam came back normal. She recovered in a half hour after sedation, and went home symptom free with instructions for diet, and long term follow-up.

I was surprised to receive a call later in the afternoon that she was experiencing increasing abdominal pain. Worried that she may have had an occult perforation from the air that was introduced during the exam, I had her come back to the emergency room to be checked for possible sources of her symptoms. We were all surprised when the CT scan of her abdomen (an imaging study that allows us to see the solid organs inside, as well as the presence of gas in places it should not be) revealed that she had widely metastatic, advanced stage IV pancreatic cancer. She was admitted as an inpatient, oncology consultation was obtained, and a biopsy done to confirm the sad diagnoses. I spoke with her at some length and confirmed that she indeed had been completely symptom free until that afternoon.

Unfortunately, it’s not uncommon for pancreatic cancer to present in this manner. Only a few months before, I spent a long weekend with a friend and his wife in Northern California. Recently retired, he ran marathons, appeared completely healthy, only to develop identical symptoms a few weeks after we saw each other, and had the same diagnosis confirmed. Despite treatment at UCSF, one of the top cancer hospitals, he died in less than two months.

Unlike for colon cancer, there is no good screening test available for pancreatic cancer, a disease that has a 95% mortality rate unless someone by serendipity is diagnosed at a very early stage. For reasons no one seems to know, it is a disease which is rapidly becoming more prevalent throughout the country. 

When faced with an illness that has such horrible prognosis and rapid progression, the dilemma for the physician is what exactly to say to the patient. Besides delivering the bad news to someone that they have cancer, how much of your knowledge do you share, and when do you share it? My personal experience is that most people no longer hear anything you say after the word “cancer.” For this reason, I tend not to say too much after giving the initial bad news, allowing time for that bombshell to be processed. Often, there are other tests being done to assess how much the disease has spread, so waiting for those results provides time for the emotional shock of the diagnoses to sink in. One of the things I learned early on in my training from one of my mentors is to never tell the patient how long they have to live. As he put it, “if you do, they will stand there and piss on your grave.” Besides not wanting to destroy all hope, the truth is, we are not gods, and no one knows the answer to that question. The best we can do is let the patient know that based on our experience, a few people with pancreatic cancer may die in a month, many in six months, a few in a year, and rarely a small number much longer than that. Since we can never predict who will fall where in that spectrum of probabilities, it’s always good to hope that you will be one of the long term survivors, while realizing that there is a risk of short term fatality.

I’m not an oncologist, so I always defer to their expertise as to what is currently available in terms of treatment options. (unfortunately, in stage IV disease, surgery, which is the only modality giving a chance for cure, is never an option). Ideally, it’s always good to have a family member or close friend involved in these discussions, but only if the patient agrees. I try to prep them for their meeting with the specialist with a list of questions (preferably written down ahead of time) such as asking about the side effects, both common and uncommon, the duration of treatment, the quality of life associated with the treatment, the additional time (and of what quality) treatment is expected to provide, and what would happen if they chose to have no treatment at all.

One thing that is crucial to all patients is to have the knowledge that regardless of the choices they make or the outcomes they have, that they will not be abandoned. While their disease may not be curable, there are medicines to help with their symptoms. Unfortunately, as science has progressed, our willingness and ability to merely sit with someone who is suffering and dying has greatly diminished. We feel guilty for not having achieved a cure, discomfort at being a witness to a process all of us eventually have to endure, overwhelmed by the amount of time such caring requires. We delegate these essential duties to nurses, family members, and the clergy. Sadly, too many of our patients die alone, as we as a society have too long denied death as a reality in the continuum of life. Just look at all the evasions in our language: the patient passed away, those who are no longer with us, the dearly departed, gone to their eternal reward, crossed to the other side, etc.

As I talked more with my patient, the more it became clear as to what a wonderful person she is. She told me about herself, her family, her planned trip to Paris in a couple of months with a friend. Rather than expressing anger as to why this illness befell her, she was more concerned about how it would affect other members of her family and her friend. After meeting with the oncologist, she decided to try chemotherapy, understanding that she could stop if the side effects were intolerable or the tumors were not responding.

She had only been home a couple of weeks, and was scheduled to start chemo when she was readmitted to the hospital with more pain, and this time with nausea and vomiting. Her repeat CT scan showed partial blockage of her stomach and colon with tumor progression. She clearly wasn’t going to be able to tolerate the planned chemo regimen, and her oncologist agreed. It almost seems that the nicer the patient, the worse their course of their illness. Despite how rapidly her disease progressed, she thanked me for all I had done for her, which made my feelings of guilt even greater than they were. It’s not that I had done anything wrong, or could have done anything differently to have altered her course. I just felt the unfairness of such a nice woman having her life so abruptly altered, as well as the existential dread of my befalling a similar fate. At the same time, I was conscious of the grace I was receiving through her uncomplaining acceptance of what turned out to be her lot, and her modeling of what a kind human being was capable of faced with the imminent end of her life. I sat with her, held her hand, and offered to stay with her until the inpatient hospice team arrived to arrange for her transfer. She thanked me again, told me she was tired, and just wanted to rest. I wanted to believe her, though part of me felt she was just trying to make it easier for me. We’re professionals. We witness too many tragedies, and have to maintain a certain distance in order to remain healthy. Still, occasionally, there are those for whom we cry.