Palliative Medicine for Serious Illness: American Roulette

Ira Mandel, MD, medical director, Hospice and Palliative Care.

“Russian roulette” is defined by Webster’s dictionary as “a dangerous game in which people fire a gun with a single bullet at their heads without knowing if the bullet will be shot or not”.

Given the danger of Russian roulette, no one in his or her right mind would think of playing that game. On the other hand, many patients and their families play a different version I call “American roulette” when it comes to important healthcare decisions.

Using cancer as an example, although other non-cancer, life threatening diagnoses could easily illustrate this same phenomenon, some people hear the word “cancer” and feel terrified and desperate. This results in patients wanting to pursue aggressive treatment. In the world of cancer treatment, the word “hope” is uttered frequently to try to calm this fear. Cancer specialists struggle to give their patients the best care that they can without taking away hope. Even when oncologists try to explain pros and cons of treatment, it is well known that many patients only hear what they want to hear and refuse to hear any information that takes away hope.

In the hope of “winning the war” against cancer, patients seek and receive many types of surgery, chemotherapy and radiation therapy. Fortunately, in many cases these treatments can be life saving or can enable people to survive longer with good quality of life.

“American roulette” occurs when people with aggressive or advanced cancers subject themselves to toxic and minimally effective treatment in the “hope” of cure or longer survival. These patients agree to these aggressive treatments, but receive little chance of benefit because they and their family cannot accept any other option than “firing the treatment gun” at their bodies. In other words, they may seek treatment that may cause significant harm to their health without knowing if the treatment with help or not and regardless of the reality of effectiveness.

Let’s use cancer of the pancreas as an example. This information was obtained from the American Cancer Society web site: “Pancreatic cancer is an aggressive cancer with the vast majority (53%) of patients already having spread of cancer at the time of diagnosis. The 5 year survival rate for these patients is only 2%.” Despite advances in the development of conventional chemotherapy, response rates to therapy are low and survival from the disease is “still depressingly poor” (as quoted by the American Cancer Society).

Wwhile some drugs may be recommended in the treatment of advanced pancreatic cancer, some patients may benefit, though no one can predict who will benefit and who will fare worse from treatment.

In a way, this is a kind of “roulette” in which patients hope for the best and take their chances, yet they may live for only an additional month, during which time they are experiencing distressing side effects and a lower quality of life.

Unfortunately, it may be difficult for patients to seek and to get reliable information about the relative risks and benefits of treatment, making decisions more difficult. Understandably, the “hope” of benefit drives the majority of patients to push their doctors to have treatment even when there may be little benefit, no benefit or even a worse outcome than no treatment at all.

There are several research trials that found better survival and quality of life for patients who opted for “symptom treatment” which Palliative Medicine provides, rather than active cancer treatments.

Several years ago, I took care of two women with breast cancer who were about the same age. One had surgery, radiation therapy and repeated trials of different chemotherapies. She survived for three years. The other patient refused cancer treatment after bearing witness to both of her parents suffering terrible side effects from chemotherapy only to die soon after treatment was started. This second woman survived for nine years and received treatment only for her symptoms.

I also have been following several patients who have been diagnosed with lung cancer– which has a very poor survival rate–both chose symptom treatment only and are still alive three or more years later. Obviously these patients may have less aggressive cancers making comparison difficult but this certainly is “food for thought” in terms of the pros and cons of aggressive cancer therapy. Maybe consider “less is more” in terms of the quality of life and survival for some patients. Perhaps standard cancer therapies may not be the best choice to meet every patient’s hopes.

What should people do who are diagnosed with cancer or other serious diseases? We all understand the benefits of a “positive attitude” and “try to hang in there for the sake of loved ones” but better informed patients are more likely to make better decisions for themselves. Patients and families may be better served by asking for more information that gives them a better understanding of their options.

I encourage patients to ask more questions. Seek more information. Give your doctor permission and encouragement to tell you as much as possible, even if your hope for benefit is dashed. You can then change your hope to making better use of your remaining time with family and friend than chasing after ineffective and potentially toxic treatment. Think about it.

Learn more about Pen Bay’s Palliative Care.

Ira Mandel, M.D., MPH is a Palliative Medicine physician and is medical director of Pen Bay Healthcare’s Hospice and Palliative Care program. He provides compassionate care with a team of health professionals who honor the wishes of patients with serious illnesses. His monthly column seeks to inform the public about choices they may wish to consider. Disclaimer: All people described in this column are not actual patients but are derived from many hundreds of patients Dr. Mandel has treated over many years.

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