Earlier this winter, an article was published by a doctor describing how a physician’s end of life choices differ from that of their patients. The article, which you absolutely should read, is mostly told as a collection of anecdotes from patients and friends of the physician, but it does a great job of discussing the issues of quality of life that arise in health care.
Most patients and families want to do everything possible for themselves and their loved ones. They want every test, treatment and therapy possible, which is definitely understandable. The article doesn’t insinuate that physicians necessarily always choose otherwise, but rather that physicians know from experience when they want to stop care and tend to chose less treatment overall than their patients. It brings up a good discussion about the difference between focusing treatments on quantity of life and focusing them on quality of life. And it’s a topic I’ve been struggling with since I read the piece last month.
On the one hand, I absolutely see the author’s point, and given my husband’s experiences as a physician and mine in other health care settings, I agree with him. If I had a terminal disease and no hope for a true recovery, I too would want to avoid hospitals, harsh treatments and other such situations and enjoy my final months, weeks and days with my loved ones. And I have already told my husband that if I end up in a persistent vegetative state that I do not wish to be kept alive by machines. We agree on these as a family and though it’s tough to discuss, and though other people in our families do not understand or agree, we are confident in our decisions.
Or I thought we were.
In the past few weeks I have continued to mull this over, and I’m finding a lot more gray in our black and white decisions. I feel that as a wife and a soon-to-be mother, I cannot imagine not doing everything possible for myself, my husband and my child. I know that as much as I would want to focus on the quality of remaining life, that if I did not explore every treatment option, I would always wonder if we could’ve done something more. If that one last treatment would’ve been the one, even if the odds were stacked against us.
To me it’s an issue of reconciling my brain and my heart. My brain knows that what a physician (and my husband and his coworkers) say are the most logical plan for these unthinkable situation. My brain knows that 2 good months are better than 2 miserable years. But my heart cannot fathom losing the time. It is the inevitable collision of science and emotion, and I’m just not sure which side to trust, but I think it’s something that deserves some time and open discussion.
Have any of you faced these decisions or had these conversations? How did you reconcile the science with the heart? What are your lines in the sand on treatment?
Katie is a 28 year old Southern Californian, married to a doctor, racking up as much student debt as possible as a full-time graduate student in a health science. Her hobbies include abusing parentheses, baking complicated desserts that almost universally involve frosting and loving her two cats more than is socially acceptable. She’s currently balancing her first child and graduating from graduate school. So planning and timing are also things she excels at. You can read more from Katie on her blog, Overflowing Brain.
I have been on both sides of this conversation, as the doctor and the family facing a terminal diagnosis. To say there are no right answers is too simple. We love our spouses, children and parents and want them to be with us, want what’s best for them. It’s near impossible to imagine that the best for them could be death. I have seen so many bad deaths, flogged so many empty shells, put people through unnecessary pain for their families, for themselves, to satisfy one last piece of hope that didn’t have any foundation. I’ve come to believe in hospice, palliative care and a kinder, more reasonable understanding of death as part of life.
Last year, when working with my probate attorney, I can genuinely say that I was surprised when he asked me what my wishes were in that situation. Not surprised that he asked that specific question, but surprised that I honestly couldn’t answer it. Everything that you mentioned was running through my mind. I work in pharmaceutical research…..shouldn’t I believe that my amazingly talented colleagues would one day be able to find a cure for me so that I could continue my happy life with my daughter? Would she just want me to “give up”? Or would it destroy her emotionally by watching me countinuously suffer, and financially by the mounting hospital and care bills?
I’m curious to see what other readers say about this, as I often wonder if I made the right decision. I realize that myabe I’ll never know, as what is “right” for me won’t be “right” for someone else. I suppose I’m looking for peace-of-mind.
I know for certain I would not want to be kept alive in a vegetative state, no questions about that. An interesting (morbid?) thought that came to me a few months ago is who would I have my husband save: me or the unborn baby? When I was pregnant with my first child, the answer was absolutely simple to me: the baby. Now that I am pregnant with my third… it isn’t such an easy answer. While I would gladly give up my life for any of my children, choosing the life of my son over mine would leave my other two children without a mom and also without my husband who is their stepdad. These situations don’t happen often and hopefully we never have to make that choice, but it definitely something that shifted from black and white to gray for me.
On another note, in September 2010 my husband’s aunt was told her treatment for breast cancer was no longer working, and she should go home under hospice care to die peacefully. We visited her in October 2010 believing it would be our last chance to see her as she lives six hours away. Having seen my grandmother pass from cancer I didn’t believe his aunt would make it until Christmas of that year, she was in bad shape. However, his aunt continued to live, and get better with no treatment. Last month she called to let everyone know that her doctor could no longer find any cancer in her body, and that she could expect to live a normal life span. She and her husband made the drive up to visit last month and had I not seen her over a year ago I would never have believed someone that looked so well could have been so sick and overcome it. Truly a miracle.
We knew a man, in his early 60s, who recently passed from lung cancer. When this man was diagnosed, he immediately began chemo. (Years ago, my husband went through chemo, for a far less aggressive form of cancer, and we know how hard it is on a body, how unpleasant and expensive and horrible it all is.) And I know that he didn’t feel ready to go – he was only about 65, with young grandchildren, I’m sure he felt that he had a lot of life left and wanted to be here. But my husband and I were talking about whether we would do the chemo, knowing how miserable it would be, and how little chance of recovery there is (for lung cancer), or opt for palliative care. And I still don’t know what I would do. I can say that logically, I would prefer to enjoy my last days. But the thought of leaving my husband and son makes my heart ache, and I can’t imagine that I won’t ever have that reaction, even as I age.
My aunt died when I was young from cancer. When she found out she did nothing to pursue quantity of life and the cancer took her very fast. This was back in the 70′s and it had progressed farther than any treatment could have reasonably hope to cure.
When my Dad discovered he had cancer in 2001 he did everything possible to extend his life. I think losing his sister without her even trying to fight made his decision for him. He couldn’t see just giving up. Even if that would have made his last three months easier.
I’m a lot like my Dad. As long as there is fight left in me I would continue to pursue every option available.
I really don’t think you can draw a line in the sand because every situation is so different. what I would do for a parent is probably different than I would want to do for a spouse and certainly different than I would want to do for a child. I also think that in the end some of those decisions are made simply for the living.
My uncle recently had a heart attack and although his heart was repaired and perfect, his brain sadly was not. In the end they decided to let him go, but it was an awful decision I wouldn’t have wanted to make. I think it took them a little longer to let him go than maybe he would have chosen, but they just weren’t ready. He was in no pain, he was gone, I certainly understand they weren’t ready to let go.
I’ve talked to my husband about this and told him the choice is his if something happens to me. I am comfortable he will make the right choice for him and my daughter and in the end I wouldn’t want to put him in a position to do something he’s not comfortable with.
I totally get this. I saw my dad battle esophogeal cancer and weigh what was told to him. Chemo and radiation didn’t work, and in the end surgery was never an option. He died 16 months after diagnosis. My cousin has stage 4 lung cancer now, chemo isn’t working and radiation isn’t an option, so she’s off to M.D. Anderson. It’s a highly personal choice and I can’t imagine having to make it.
In my case, I was the one that had to decide to remove Gregory from life support. Even though I pretty much knew he was gone when I found him, the days after were a constant struggle of what-ifs. I think I made the decision while I was in extreme shock and feel the guilt of what if I hadn’t. Would he have woken up and been ok? Haunts me every day.
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