"Dying Better"
“If I could not provide a better life to my patients, could I have provided a better death?”(1) Dr. Azra Raza poses the haunting question. She writes a scathing indictment of oncological medicine as currently practiced on two counts. First, a major problem is the great lengths physicians will go to in order to keep a patient alive, at a high cost in human suffering. A second and related area of concern in medical care is the lack of candor by oncologists when talking with terminally ill patients.
Ethics has not kept up with technology, so the brunt of the blame cannot be put on physicians. However, a conversation is needed concerning when to quit doing the medical procedures we know we can do unless we also evaluate if we should do them. In reference to continuing extreme treatments for terminal patients, Dr. Atwal Grande writes: “In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.” (2)
Describing the lingering death of a patient who was intubated and placed on a respirator when the doctors knew the patient would soon die, Raza writes: “What followed was less about supporting life and more about prolonging death.” She regrets the suffering she caused her patient and declares that her ethical obligation is to relieve distress, not to harm using advanced technology. Raza continues: “Yet by offering to intubate her and connect her to artificial life support, as if death were an option, did I fail to protect her?” Doctors are required to offer all available treatments even when they know the choices are not between life and death, but between death and a nightmare death due to technological interventions. Raza asks a pain-laced question: “Where does medical and individual responsibility end and societal responsibility take over?” (3)
Gwande describes his own experience at a doctor’s appointment with his father who had end-stage cancer. “She [the physician] described a variety of different combinations of the drugs to consider as well. The only thing she did not offer or discuss was doing nothing.” (4) This situation is understandable when we consider that physicians are trained in what to do, not in when not to interfere. Beyond that fact, hospital regulations and societal pressures require a doctor to keep “doing” something to save a life. There’s a fear of doing too little, but doing too much can also be detrimental. The problem is a life is not saved; it is only briefly sustained, robbed of the quality the patient would want.
Lack of candor between physicians and terminal ill patients is another concern which needs to be addressed, not simply a complaint to be laid at the feet of physicians. To not admit that death is inevitable is a failure of culture. Society—you and I—need to be willing to face the subject of mortality and advocate for change. People want and deserve to know the truth about their diagnoses. Doctors are often reluctant to disclose how imminently death will probably occur from a serious illness. One reason is they care about their patients and are drawn into the unrealistic optimism some express. Sadly, both patient and doctor end up participating in a fantasy that is ultimately not helpful for having a better end-of-life experience. Hope is fine to have, but as Gwande points out, “hope is not a plan.” (5)
Yet our entire medical system is based upon treating the slim chances, not the most likely outcomes. Gwande calls our multi-trillion dollar network for dispensing medical care “the medical equivalent of lottery tickets.” There is little in the medical “system to prepare patients for the near certainly that those tickets will not win.” (6) To tell patients the truth about their mortality is a start. Nurses and doctors need to help people prepare for what they will face. Doing so requires honesty and really listening to what matters most to the patient. It involves finding out what type of ending the patient wants to his/her story. If learning how to discuss realistic options for terminal patients is not part of medical school curriculum, it should be.
Fortunately, the hospice care industry is offering a practical answer or to my way of thinking, a “better way to die.” The problem is few patients choose it over continuing medical interventions. To accept hospice care is to accept the reality of their situation. To opt for more chemo, more surgery, or more treatments provides the illusion of fighting the battle. There comes a time, however, when both doctors and patients “need to switch from fighting for time to fighting for the other things” that they value,” (7) such as spending time with family or however they wish to spend their last days. Depriving patients of frank conversations means they won’t be able to make meaningful choices for their own lives. On the other hand, being honest helps the patient prepare, which gives them a measure of control.
I’ve known patients who were very glad they chose hospice care. People find it lends dignity and a sense of autonomy to their life. A hospital environment is not conducive to the privacy that most people want. Patients in home-hospice care can do what they want—of course within their health’s limits—at home. If they want to drink a milkshake and watch their favorite TV program, they can. If they want to use their wheelchair or walker to go out on the porch and bask in the sun, no one says “it’s against regulations.” In a hospital setting, attached to an IV, one certainly can’t order food delivery or keep a degree of normalcy. People at home often comment how comfortable they feel in familiar surroundings, attended to by hospice nurses. They have their own recliner and their own comfortable bed. One lady who discussed with me her decision to accept hospice care remarked how much her dog meant to her. Having her lap dog snuggled against her brought her joy. Hospitals strive to keep one safe, but is that what people really want in the end? I think most people desire the ability to share their stories and enjoy their friends, family, and pets.
If you get a terminal disease, most of the responsibility for the way you die will be yours. If you have determined ahead of time what course of action you wish to take, then you can remain firm in your decision, even if doctors urge treatments with almost no chance of working. (Yes, it happens to please the patient or the family.) People should ask themselves now: how would I want to be treated if I had a terminal illness? Do you want last-ditch efforts to prolong your life at the risk of harmful side effects and with little possibility of success? Would you instead choose hospice care at home? Let your loved ones know now. That way, if you do become ill, you can end your story on your own terms.
Reflection:
How could you approach the difficult conversations about your own death with loved ones?
1 Azra Raza, The First Cell, 116.
2 Atul Gawande, Being Mortal, 178.
3 Raza, 117
4 Gawande, 118.
5 Gawande, 172
6 Gwande, 185.
7 Gwande, 171