Post Terminal Prognosis: Topic No. 1 – Quality of Life vs. Quantity of Life
Quality of Life refers to focusing on the palliative care aspects of a TiLOs daily life with any treatments limited to minimizing symptoms and discomforts including among other things pain management to maximize comfort.
Quantity of life is essentially focusing on the extension of survivability of a TiLO by administering treatments in an effort to cure the underlying medical condition that warranted the terminal prognosis.
Remember, a terminal illness, in medical terminology, is defined as a disease that will more than likely result in the death of a patient within a period of six months or less, regardless of whether they have any form of treatments.
Therefore, based upon the nature of a terminal illness, one of the first issues to address involves a conversation with the medical care team as to whether the focus will be on quality or quantity of life. What are the options, if any, that need to be considered?
A question that generally arises is, if a person chooses to focus on quality of life, is that considered to be giving up?
In my honest opinion, no, I do not believe that choosing quality of life is giving up. My loved ones and I have always viewed the decision as to whether to start, continue or stop treatments to be a very personal one.
As part of the decision as to whether to start or continue treatments, a person must consider the side effects of such treatments and weigh that against the potential upside of the treatment extending life for any period of time. Then, they may wish to factor in other considerations that they believe need to be considered including their quality of life.
Quantity of Life
Jimmy, my younger brother, chose to take another round of chemo even though his primary doctor, who was also a very close personal friend, warned him that there was a strong possibility that doing so could shorten his life. As Jimmy shared with me, although he was afraid that he might die sooner, he also was mindful of the fact that he was dying and just maybe the additional chemo treatment might help him to rebound just one more time as it had done so a couple of months earlier.
Within less than 12 hours of receiving the chemo treatment, Jimmy’s condition quickly deteriorated. He passed two days later with me by his side in the hospital.
Quality of Life
Melanie, my wife, had been battling two of the rarest, most aggressive combinations of breast cancer for over a year with chemo, a double mastectomy, a craniotomy (brain surgery to remove a tumor mass), two different types of radiation treatments, metal talons screwed into her skull, meds, plus all of the side effects that went along with each of those treatment regimens not to mention all of the lab tests, scans, hospitalizations, doctor’s appointments, etc.
Finally, just over a year after the initial diagnosis, there were clear signs that the most recent combination of treatments was paying off as most of the active cancers were being eliminated. All we needed was one more set of clear scans showing no new signs of cancer or growth of existing tumors, which had been the case with the most recent sets of scans. Well, that was not to be, as Melanie developed new symptoms which were caused by another very aggressive, fatal form of brain cancer called leptomeningeal carcinomatosis, wherein the cancer cells get into the spinal fluid and the lining of the brain.
After meeting with our Medical Oncologist at the City of Hope, who gave us a revised terminal prognosis from the one that she had given us six months earlier in January 2012 plus, she also shared information about the limited treatment options, side effects and survivability info, Mel and I left knowing that a decision had to be made fairly quickly as to what was the next step. Treatment or no treatment? Quantity of Life vs. Quality of Life?
Mind you, we have two children including our youngest who was a senior in high school at the time. Over the next several days, I scoured the Internet searching for other possible solutions, researched the existing treatment options, gathered additional information on this latest disease and even shared in online conversations with medical professionals as well as others whose loved ones had been diagnosed with some form of leptomeningeal disease.
After a lot of conversations, four short days later, Mel and I headed back to COH.
Although Melanie’s physical condition was weakened during most of the previous six months which required the use of a wheelchair, when we went back for her follow up appointment, she opted to walk up to the doctor’s office on the 3rd floor. When the M.O. came in along with her colleagues, Melanie calmly and collectively informed them that she was not going to try the treatment option which involved inserting a medical device into her skull.
Quality of Life was going to be our focus.
While the doctor and the rest of us in the room were trying to keep from crying, Melanie, a children’s music educator, decided it was a great time to share a new song that she had been working on.
While I have no way of knowing what would have been had she opted to try the one available medically invasive treatment option, I do know that we have plenty of pictures and home videos, videos of Melanie performing songs on Youtube.com/MWPinknotes and a lot of great memories to share including the celebration of her 49th birthday; spending time with our kids enjoying the 4th of July celebration; and watching the Closing ceremony of the 2012 Summer Olympics, which she enjoyed very much. Do I miss her very much even after nearly six years? Absolutely. Do I regret the decision made? Absolutely not. Did we give up? No, we merely decided to go a different direction and enjoy each day to the fullest, one day at a time.
Both of my loved ones were at the same critical point as to whether to continue or stop curative type treatments. However, they made two very different decisions. To this day, I respect and support both.
As with any decision in life, there are always consequences.
One note of caution. I have known of situations where terminally-ill patients and their family will travel great distances to seek more treatment options, only to find that there are still doctors who will refuse to administer any form of curative type treatment if they believe that it will do more harm to the patient than good. Just because we want something does not guarantee that we will either get what we are seeking, or, just as important, we may not get the results that we are hoping for if the treatments options for which we are seeking is administered.
It is very important to maintain a healthy perspective as to the merits of the circumstances and options that may be available when making decisions with respect to quality vs. quantity of life. While Mel and I decided to shift our focus to quality of life, I continued to vigorously research for any other options to be considered during her final two months of life. Note that these efforts were at night or during periods when she was resting so it would not take away from helping Mel get the most of each day. We still embraced hope each and every day that just maybe today would be the day when someone would come up with a treatment to at least slow the advancement of the leptomeningeal carcinomatosis.
While there are always those stories of a “miracle” cure or complete recoveries, it is very important to keep in mind that each of us are different, therefore, there is no guarantee that the efficacy of any treatment will produce the same results. Again, it is a decision that must be carefully weighed when it comes to quality vs. quantity of life issues.
Hugs to one and all!!! ❤ ❤ ❤
~D. Toru White~