On Death and Dying: Quantity of Life or Quality of Life – Sometimes We Have to Choose
If someone asked you today, would you prefer a longer life but endure much pain, or a shorter life with less pain, would you have a quick answer?
I didn't think so. Few of us do. We want to qualify our statements. That is what makes end-of-life decisions so tricky. Few issues are black and white.
What if we needed to decide with - or for - a loved one whether to, at say age 85, have radical surgery to remove a cancerous breast, followed by chemotherapy and/or radiation which could prolong a life for a few months at best, or let the cancer go and live life a day at a time, until the end? Tough stuff right? But options like these are presented to people on a routine basis.
All of us should plan ahead so our loved ones know our values and our choices should something dreadful happen to us at a time when we can't make choices for ourselves. Thus, last week's post On Death and Dying: How Do we Talk Parents Out of Denial and Into Getting the Legal Work Done?
Having a living will as part of our Health Directive, with someone we trust appointed as Power Of Attorney, is important for us, yet I believe it's even more important for our families. When our loved ones know our end-of-life wishes ahead of time it can make a difficult and painful decision for them considerably easier. Whether our choice is to be kept alive as long as possible under all conditions or whether we want to specify conditions where we want to allowed to die with the least amount of pain, we can write our choices down in a living will. As we mature and develop our ideas on what we'd like, we can update the living will.
Even when all the legal work is accomplished, decisions aren't easy. My parents were each faced with difficult choices. I don't believe I'd change a thing about either choice, even if I'd been able to look ahead. Still, their last years were very hard.
In his mid seventies, Dad's World War II closed head injury came back to haunt him. He needed a shunt inserted into his brain, as the scar tissue left from the injury was backing up natural brain fluids. If he didn't have the surgery, he'd begin to show signs of dementia which would worsen with the years. Since inserting a shunt into the brain to drain excess fluids is considered a fairly safe surgery, when presented with this option Dad didn't think twice. He chose the surgery.
Whether the scar tissue caused complications that the surgeon couldn't overcome, or something else went wrong, we don't know for sure. What we do know is that Dad came out of surgery with instant, severe dementia, which would render the next ten years a challenge to Dad, as well as for us as his loving family. To see this intelligent man, a true gentleman of the old school, living in such an agonizing mental state was devastating to us all. Many of my articles on dementia focus on helping Dad cope with his life after surgery.
Now, 15 years after his surgery, several studies have shown that some anesthetics are suspected of pushing elders over the edge into dementia. There is even interest in studying the effect of the concentrated oxygen given to patients to bring them out of the anesthetics. My 20-20 hind-sight? The anesthetic may have been to blame.
Does it matter? Not really, as we can't change a thing. And, given Dad's choices and the knowledge at hand at the time, I'm not sure there was any proper decision to make other than the one he did - have the operation. Had he known ahead of time how he would have to live his last decade of life, what would he have done? I try not to dwell on that as I can't really know the answer. He made, with family support, the best decision he could at the time, given the available knowledge. He died in my arms a decade after the surgery.
In her early seventies, my mother was showing early signs of colon cancer. She had a family history of colon cancer, and she also knew it was a slow growing cancer. Meanwhile, she suffered from severe osteoarthritis as well as several other diseases. Dad, her husband, was by that time in an excellent, local nursing home.
When the non-invasive tests for colon cancer showed the need for more testing and possible surgery, Mom and I discussed the issue. She was very frail and we both knew that any treatment she needed would be very hard on her, if not fatal. However, I did not offer an opinion.
I just said, "Mom, should we schedule some tests? What do you want to do?" She said, "I can't take the tests and I won't survive surgery. I don't want to do anything."
I pushed just a little, but not much. I totally understood her choice. I, too, felt she had many years to live if she did nothing. I wasn't sure how long she would live if she had surgery. In the end, it was her choice. I told her I would support her in any decision she made. The whole family agreed.
Mom did nothing about the potential cancer. She lived another eight years or so. The last seven years she spent in the same nursing home as Dad. Her frequent falls at home frightened her and put her at risk, so moving to the nursing home was her choice.
Mom ultimately died of "organic brain disease." However, in the months before her death, she was in unbearable pain until she was given, by hospice, bone cancer medication. This targeted medication was the first drug to make her nearly pain free in years. Even liquid morphine hadn't done that.
In my heart, I believe colon cancer had spread to her bones and that was a large contributing factor to her pain. Hospice helped her through her last stages. She eventually required morphine injections to manage the pain. She died peacefully, after some quality time under hospice care. My sister and I were with her during her final days as her body slowly shut down. She died in peace.
Which Way to Turn?
One final story and then it's time for you to think. You or a loved one may have to make a choice like this:
My friend's mother was the 85-year-old mentioned in the introduction of this article. She was quite healthy other than COPD, a lung disease many elders succumb to. Then she was diagnosed with breast cancer. She and her family discussed her options. They decided, strongly led by the mother, to let the cancer run its course and move to a hospice cottage, provided by the retirement center where she'd lived, once the pain got to the stage where she needed more care. She lived in her apartment for another year, with a decent quality of life. Then, as the pain from her lungs and her cancer became severe, she moved to the hospice cottage. She lived about six months under hospice care and her family was with her when she peacefully died.
The Flip Side
Another friend of mine had an 87-year-old mother who was diagnosed last winter with breast cancer. This woman is healthier than many 65-year-olds. She and her family discussed the issues, including the risk of complications from anesthetics. She chose surgery and chemotherapy. The family supported this option. It was tough, but she did it, and at this point in time, she is doing well. For her, surgery appears to have been the right answer.
These illustrations show how complicated our health choices can be. Most of us want as much quality - and as much quantity - of life as possible. The path to that magic combination can be complicated. For many there is no clear answer.
Please admit to yourself that every one of us must one day die - even you. Then discuss openly with those who love you what you would do if you had to face different circumstances.
Don't get morbid. I'm not suggesting that at all. Situations in the news, or friend's health issues, are good springboards for conversations. I'm just saying that the more we work death and dying into our natural conversations, the more information we are giving our loved ones about our end-of-life wishes. We don't need to be talking about our own health to put forth our values.
Make it a point to talk of death as naturally as you discuss exercise, diet and all of the good things you do to live a quality life. Then, if you are faced with choices such as those above, you will face them with at least some personal insight, and if your loved ones are faced with deciding for you, they will know what you would have wanted.
None of us want to make these painful choices, but life happens to all of us. Let's be realistic and acknowledge that part of life we don't want to talk about - the inevitable end of our lives and how, if given a choice, we will want pass from this world into whatever lies beyond.