Terminal Illness #AtoZChallenge

Terminal Illness     #AtoZChallenge

Typically when we think of chronic illness we don’t think of terminal illnesses. However many illnesses that end in a terminal condition can, in fact, be a result of a chronic illness. By definition, a chronic illness can be one that lasts more than three to six months. There are many terminal illnesses that would also be considered a chronic illness.

Several members of my extended family have battled cancer over a number of years. Some are still fighting the battle, keeping it at some sort of bay. Others are not so lucky. I have other family members who have battled kidney disease, one of who even had a transplant. Many times in my life I have encountered those who were so ill that it was deemed by them and their physicians that hospice care was the most logical path.

Sometimes the decision is made to forego further treatment in order to improve the quality of the limited time they have left. While this can be a controversial topic, I believe everyone has the right to determine their own best course of healthcare. Sometimes the treatments we may endure may not definitively prolong our lives and may leave us extremely sick or weak as a result. Maintaining a good and open rapport with your physicians is imperative in understanding where in this treatment process you may find yourself.

A relatively new change healthcare that could potentially cause concern, is the involvement of palliative care physicians early in your treatment. Palliative care has typically been thought of as an end-of-life option. However, the palliative care physician has evolved in many areas. Well before my brother reached a point in his cancer care that things were deemed to be terminal for him the palliative care team was involved in his care.

The first time we met with them in the ICU they explained to us that their role is expanding. In today’s healthcare system they are taking a more proactive role, with the express hope of decreasing suffering while increasing quality of life. This treatment can take many forms depending on your particular medical scenario. They also continue to make themselves available in the more traditional role of hospice and end-of-life care.

For those who are facing the decision as to whether to continue battling a seemingly never-ending battle with a disease process, this is a very difficult and personal choice. To some, it may sound like giving up. A better way to look at it is that the person is coming to terms with their situation, and choosing to embrace the time they have left and doing their best to ensure it is quality time with those they love.

10 Replies to “Terminal Illness #AtoZChallenge”

  1. Wait, wait, wait… back up…
    DECREASED suffering? INCREASED quality of life?
    Sorry, I honestly have a hard time believing such people exist. Are they not covered by insurance? Are you sure these aren’t space aliens? How do such magical creatures find patients? Is there a wishing fountain you toss a coin in or something?

    I’m still holding our for the hope of a doctor who doesn’t make me worse. That’s it. Better left the hope station years ago. Not worse, that’s what my goal is now. Not worse. Please don’t make me spend piles of money to get worse and still have nothing but dumb looks from medical professionals — that’s all I ask. Your unicorns sound lovely though.

    1. While they do exist, I have only encountered them once, about a little over a year ago, and definitely not in my own care. Many pain management physicians state that they believe in reducing suffering and increasing quality of life, and I do not doubt that some do. However, I’ve been to several who routinely had patients screened by their physician assistant who relayed that the treating physician flat refused to provide any sort of treatment unless I agreed to multiple injections of various drugs in my spine. It is worth mentioning that I have had to undergo so many of these injections that I have reportedly developed scar tissue from them. I always brought these records with me, yet they were unfazed by the history of ineffectiveness. One practice went so far as to tell me that I couldn’t see the physician unless I was to be undergoing a procedure. All I wanted was to try various treatments available through physical therapy. As such, the argument that they could have felt I was drug-seeking is obviously irrelevant, as I wanted no narcotics. I simply wished to reduce my pain through therapeutic modalities such as TENS, physical therapy, etc.

      The switch from palliative end of life care to one that includes reducing suffering and improving one’s quality of life is one that definitely does exist. It is in its infancy and as such not widely known. Thus far I’ve only encountered it in an inpatient setting. I’m unsure where this shift in care will go especially with the recent shift in attitude by providers regarding pain medications. We will all have to wait and see how things progress and how this new specialty prepares itself for the challenges that lay ahead.

  2. Acceptance, I believe is very difficult stage to reach…for the patient and for those associated with the patient. Quality over quantity is an equation that one needs to balance for oneself. Its a lonely battle till one arrives at the stage of the acceptance, as one is fighting with self. Ooff! Life at times really doesn’t has simple answers!
    Anagha From Team MocktailMommies
    Collage Of Life

    1. You are absolutely right when you state “life at times really doesn’t have simple answers”. When it comes to someone with a complex medical situation there are often no easy answers, and sometimes little to no answers at all other than what the symptoms are not. Acceptance, when you are unable to face the medical demons you face, is a very challenging task. One that can be a daily struggle. More physicians need to start conversations with asking how they can help you to improve your quality of life. These discussions are never easy but are well worth the temporary uncomfortable feeling to achieve a better quality of life. The answer to quality of life is extremely personal and subjective. It is unable to be regulated or have a set series of treatments in a flowchart for a physician to follow. It relies on open communication and acceptance of the fact that some conditions may not be curable. When it comes to these types of patients, one of the primary rules of medicine should apply which is above all else do no harm. By not addressing quality of life, I believe this borders on negligence as people have a right to treatment that improves their life as opposed to just maintaining it whenever possible.

    1. Thanks for taking the time to comment! There is absolutely a benefit to this new trend in healthcare. I cannot wait to see how it progresses and affects the field of medicine. One would think that alleviating suffering and improving one’s quality of life would be cornerstones of the medical profession. However, somewhere along the line, the profession changed to prolonging life without thought as to the quality of life.

  3. I’m quite familiar with pallative care and am happy to see involvement earlier than end-stage. I whole-heartedly believe every person has the right to choose their own journey. I wish we as a society talked about this more openly, more fully, more frequently. Thank you for your thoughtful post.

    1. Thanks for reading and taking the time to comment. I agree wholeheartedly that as a society we must begin talking about this more openly and honestly. Until then, I’m not sure how much this new approach to healthcare will evolve.

    1. When dealing with a chronic or terminal illness, we often lose all control over our life as we expend every ounce of our energy simply battling the disease and the treatments which carry their own side effects. At some point, we should all have the ability to discuss what we feel is in our best interest not just medically but in order to get the most of the time we have left. I personally believe that nobody should be able to tell you that you must prolong suffering when there are many options available to keep you as comfortable as possible while allowing you to at least try to enjoy time with those you love.

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