I have touched on this topic quite a bit in discussing my personal justification for discontinuing further treatment in the face of an incurable, terminal disease. But, recently, I have stumbled upon a number of articles and blogs that provided me with some further perspective on this important topic.
It seems that what makes this problematic is the fact that many doctors and patients just don't want to talk about death or life expectancy. In some cases, the patient may not even know that there is no chance of a cure. So it's impossible to make an informed decision when you don't have the right information.
A recent article in the Globe and Mail mentioned a couple of studies with some shocking results. In one study, only 18% of 440 patients who were likely to die within a few months talked to their doctors about this fact. Another US study found that 20% of family with loved ones in hospice were not told that the disease was incurable. Dr. Gary Rodin, head of psychosocial oncology and palliative care at
Princess Margaret Hospital in Toronto, refers to a "conspiracy of silence" that existed for years amongst the medical community, such that doctors wouldn't talk to patients about death. I know from personal experience that I have had to push for information on my own life expectancy at various stages of my treatment. I could sense almost a reluctance to talk about it. I understand misgivings around giving an exact time frame, but my psychologist was the only one who ever said, "You know that this thing is going to kill you." Once my cancer returned and particularly when it metastasized, I knew for sure that I was going to die because of my own research.
Another perspective to this is that the medical community is trained and driven to treat patients to the bitter end (and bitter it may be). It seems there is always something else to try, whether its a new drug, surgery or radiation. Even though the odds of the treatment helping you may be very low (and even zero in terms of a cure), there is a tendency to offer it anyway. And we trust them so much we go along with it, often suffering through pain and sickness and tremendous emotional stress, and ending up no better off or maybe only marginally better off. Even if you thought you might get an extra month or two, would you want to be too sick to do anything with that time other than feel sick and maybe disappointed that you didn't get more. Dr. Larry Librach, in a recent article in the National Post mentioned an old doctor's joke:
"Why do they put nails in coffins? ... To prevent the oncologists giving
them any more chemo."
But it's not always the doctor. Surely there is an onus on the patient or their advocate or loved ones to ask the questions that need to be asked. If an illness is incurable, they need to know that and they need to have some idea of how much time they have left. How unfair is it to not know you are dying and therefore not able to do and say the things that you really need to say and do? And just like doctors may not want to "give up", many patients don't want to feel that they are giving up by not going ahead with anything the doctors could throw at them. Even if the odds of the treatment helping are extremely low, there is a tendency to go for it. People buy lottery tickets all the time with worse odds. And I think that many of us have trouble letting go of the deeply ingrained belief that we are going to live forever. We believe that we may be that one in a million case where the treatment delivers a miraculous cure.
In other cases, it may be the patient's loved ones who push them to undergo these additional long-shot treatments. No one wants to let go, so if they hear that something "might help", they may pressure the patient into going ahead. In turn, the patient will go along with it because they don't want to let their loved ones down. Or they don't want to be perceived as giving up when there might be a chance of spending more time with them. In many cases, everyone is fooling everyone else and themselves but it is the patient who must endure the effects of the treatment.
I am often asked about hope. In fact, I have the Japanese symbol for "Hope" tattooed on my inner arm. When asked, I say that I have hope for a miracle cure but my real hope is that I will have a good death, with little pain, and that my family is well looked after when I'm gone and no longer there for them. I also hope that everything I do before I die leaves a lasting legacy that can help others, because this is integral to my sense of the meaning of life. I hope that I am remembered with love.
But it is hope that often drives a patient's decision to continue treating an incurable disease. Dr. Lucy Hornstein, in a recent blog on huffingtonpost.com mentions a colleague who tells his patients that he is in the business of hope. I think a lot of doctors honestly feel that way, but I think that making a terminal patient believe that another course of chemo or whatever might help, where "might" is a real long-shot, is actually giving them false hope. And many of us are so beat down or scared witless that we grasp onto anything that smells of hope. This just isn't fair.
So how to we address this? What is the right way of looking at it?
First of all, doctors need to understand that patients don't need false hope and that they may be giving it to them by offering further treatments that may only give them an extra month or two (at best) but subject them to, at a minimum, discomfort and disappointment. I believe the doctor's Hippocratic Oath includes a statement about "doing no harm". Doctors may think they are satisfying the oath by trying everything they can, but they need to understand that side effects, pain, illness and even the emotional strain of hoping for something that isn't going to happen is, in fact, doing harm. Rather than constantly trying to treat or even going so far as "heroic attempts" to extend life, doctors should be thinking about how they can help their patients understand that they are going to die and doing whatever they can to make their remaining time as comfortable as possible. That's certainly what I want from my doctors and I believe that, given an educated choice, many patients would feel the same way.
And let's understand what the real choice is. It is not a choice between "giving up" or "continuing the fight". That's not a choice. In fact, as Dr. Hornstein suggests, if a treatment actually has a good chance of
curing you, no responsible
doctor is going to present it as a "choice". She says, “...
doctors only offer you choices when it doesn't actually matter." If your doctor offers something and says "it's up to you", Dr. Hornstein suggests you just say no and go about making the most of what time you have left however short or long it is. I couldn't agree with her more!
If you have an incurable disease and you have done all of the standard treatments, the real choice may be between accepting the fact that you are going to die and try to have a "good death", or to keep trying whatever the doctors can throw at you and have a lousy last few months or years. That is the choice that I saw and that led me to the decision to stop further treatment.
Inevitably, all of this comes down to the need to get the idea of death out in the open and talk about it. Even if you're healthy, you are going to die sometime and it could be sooner than you expect. You can at least make it known how you would like to be treated. Death is a natural as birth or any other major milestone of life so we shouldn't be afraid to talk about it. If you have a terminal disease, it is critical that you talk about it with your doctors and with your loved ones so you can make the right choice for you. Some people feel that even talking about end-of-life is a form of giving up. Nothing could be further from the truth. Not talking about it is giving up and going with the flow; just doing what the doctors want until they are sticking a breathing tube down your throat to keep you alive on machines. I wouldn't wish that on anyone.
Talking about death is important for everyone, especially for the patient, but even for those who go on living. By talking about it, we can make good decisions and, ultimately, make sure that everything is said that needs to be said. As Janice Van Dyck says in an article on huffingtonpost.com, "The power of letting go means no one becomes the victim of death."
No one should feel like a victim and no one should feel, or be made to feel, like they are giving up. I've said this many times - you should have no regrets. This applies particularly when you choose a good death over a 'never say die' medical lottery.
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